How would you handle this friend?

Discussion in 'Fibromyalgia Main Forum' started by Empower, Jun 19, 2009.

  1. Empower

    Empower New Member

    I have had this friend for a long time. Anytime I start to talk about my pain and fatigue, she changes the subject

    Yes, I know people don't like to hear it, but I need to vent on occasion

    A couple of years ago, she was in a serious cycling accident and had months of rehab. I guess she figures, she was in pain, she is all better now, I can do it too. Throughout her life, she has been blessed and really led a charmed life except for her obnoxious husband

    Yesterday, I received a Fed X book from her Self Help, how to find happiness

    I was ticked!!! I know I shouldn't be, but how - I leafed through it and I am all better now!


    What do I say to her?
  2. richvank

    richvank New Member

    Hi, Empower.

    I'm not sure what you could say to her, but I do think that the fact that she took the trouble to send you this book means that she does care about you. For whatever reason, even though she has suffered from the accident and had to go through rehab, she doesn't seem to understand your situation, or she doesn't have the capacity to cope with it.

    I can tell you that when I was younger, and hadn't had much in the way of health problems myself, I found it very difficult to relate to people who were suffering. I think the problem was that I felt guilty because they were suffering and I was well. I know that wasn't rational, because I was not responsible either for their illness or my wellness, but that's how I felt, and it was a big barrier for me.

    Then I got rectal cancer, and fortunately was later cured of it. Now, for whatever reason, I can relate to people who are suffering, and I don't feel any guilt because I am not currently suffering. None of us knows when it will be our turn to go through something like that.

    I guess I would advise you not to be too hard on your friend. Maybe you can somehow get it across to her that what you are going through is a serious illness, even though perhaps you "look fine," as people often say to PWCs. Then maybe she will be better able to relate.

  3. frickly

    frickly New Member

    but I do sympathize. I have a friend who is my only close friend. She also changes the subject immediatly anytime I bring up any thing about my CFS. It dosn't matter if its venting, talking about my treatment or how I am starting to feel better because of my treatment. I don't think she beleives I am ill and I am sure she dosn't know what CFS is. Not once has she ever asked me what it is, how I am feeling, nothing.... It is difficult when this disease consumes our lives, for obvious reasons, but we cannot even discuss it with the people that are closest to us. I do not discuss this with her at all anymore and have decided that she cannot be the friend that I want or need. She is still a friend but is a little further away from my inner circle, if that makes sense. I now only talk to my husband or sister about these issues.

    I don't want to give her info about CFS and try to educate her because I don't want to feel humiliated anymore. However, if this is someone that you want to keep in your life, you could try this and let her know how this consumes your life right now and could use some support.

    Take care,
  4. Empower

    Empower New Member

    Wise words

    I know it is hard for people to understand when we look well, as I usually do

    Thanks for your advise
  5. Empower

    Empower New Member

    I cried when I read your post, because I don't think my friend thinks I am ill either

    Your right, keep it within the family, what a shame

    Yet when others are suffering, I am right there for them

    I even CLEANED HER HOUSE, MADE HER FAMILY DINNERS when she was in the accident, even though I could barely make the 45 minute trip home afterwards from the exhaustion

    That is what burns me!

    Thanks for your post and for understanding
  6. frickly

    frickly New Member

    I understand your anger about giving and never getting back in return. I always want to be the kind of friend that I wish I had and it is difficult to not let the anger take hold when our closest friends do not return the favor. I guess this is something we have to accept and why we have support groups like this.

    Take care,
  7. Marta608

    Marta608 Member

    As soon as you can unclench your teeth, you say "Thank you for the book".

    Face it, there is no way for others to know what we live with and the fact that doctors aren't supportive either doesn't help. That's why places like this board are so important in our lives, even if we don't come here often. People here pretty much understand.

    Meanwhile,I understand your frustration and share it.

    [This Message was Edited on 06/19/2009]
  8. Empower

    Empower New Member

    Your right, that would probably be the best response

    (when I can unclench my teeth lol

    better send an email, as I know a telecon would sense the frustration in my voice
  9. TeaBisqit

    TeaBisqit Member

    No one will ever really understand unless they have it.

    I have a close friend who tried to tell me the other day that my fatigue is just depression. And I just wanted to kill her. My fatigue has been getting steadily worse since January to the point of me having a hard time doing anything, including taking a shower. And it's from the Hashimoto's which is out of control. It's one hundred percent physical. And when someone keeps telling me it's depression, I just want to scream. They just don't get it at all.
  10. shari1677

    shari1677 New Member

    I agree with most of the other posters that this friend of yours must care if she is sending a book to you. I think you should thank-you and read it. You may find some good hints in there worth implementing. It's not a cure-all I'm sure, but there maybe something good in it for ya.

    As far as friends go, none of mine really know how I feel. One of my friends is pregnant and she complained about how tired she was. I told her mine was worse than that, along with pain. She kinda looked at me funny and changed the subject.

    Unless they are walking in our shoes, nobody can understand the severe pain and fatigue we suffer with 24/7. I try to understand that, but sometimes, it really ticks me off that I have nobody to talk to - not even family.
  11. jasminetee

    jasminetee Member

    When I read this: "I even CLEANED HER HOUSE, MADE HER FAMILY DINNERS when she was in the accident, even though I could barely make the 45 minute trip home afterwards from the exhaustion"; I got mad for you as well.

    If I were in your shoes I would remind her of this and let her know that when she doesn't care to even listen to your problems you feel hurt and let down. Then see how she reacts.

    How she reacts might tell you a lot about what kind of friend she really is. She may tell you what you want to hear right then but continue the behavior. However, her response could really help you assess whether she has it in her to be there for you.

    I would also ask her why she gave you that book. I would tell her that I think she's trying to tell me that she thinks my illness is really just an attitude problem and ask her if this is so.

    I personally can't handle friends/family who aren't there for me anymore. Once you're suffering all the time I think it's normal to become intolerant of people not treating you as they should. IMO, you're better off expending your energy with those who really want to be there for you.

    I know it hurts. I do have to say that I'm a lot happier not having contact with people who upset me though. But I did have to go through mourning the loss of the relationships first.


    [This Message was Edited on 06/19/2009]
  12. Hawkeye

    Hawkeye New Member

    I found out a long time ago that this disease is a very lonely disease and you can not find anyone who totally understands unless they are also suffering with it. It's not that people do not care but it is a typical case of until you walk in someones shoes you don't understand but the people in our life can still care. I think by sending you the book she somehow thought that it would help you and you should be thankful that someone thinks enough of you to reach out go through the process of thinking enough of you to buy you a gift. Even though it is not in the way that you wanted it still has the message that she is your friend and she cares that you are hurting. Thank your lucky stars that you have her in your life and put the book on your shelf and who knows maybe at the right time sometime in the future it just may brighten your day when you really need it.

  13. Engel

    Engel New Member

    Friends, family, strangers ... they just can't understand how we feel, what we deal with because THEY don't have this horrible disease! What's even worse is they don't want to learn about it either!
  14. LindaJones

    LindaJones New Member

    I also have friend who doesn't understand
    she thinks cfs means that you are "tired"
    I told her that cfs is very serious for some people
    it is not the same as being "tired"
  15. Empower

    Empower New Member

    Thanks for your responses

    Yes, I hear "well I get tired too, so I must have CFS too!"

    I try to explain that it is not just tired, that is an overall exhaustion, but it doesn't matter to them

    Oh well

    Thanks again all
  16. Leaknits

    Leaknits New Member

    Give the "friend" the following letter. Yes it's refers to ME/CFS as CFIDS but the feeling of the letter may get through to your person I would not call friend.

    Highlight the 8th paragraph. Maybe "friend" will get the message. Maybe not. You will have tried. Cripes, you don't need "Self Help, How To Find Happiness, you and the rest of us need a cure for this bleep we live with day in, day out.

    Letter to people without CFIDS, Fibromyalgia and/or MPS:

    Having CFIDS/FMS/MPS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about CFIDS/FMS/MPS and its effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand ... ... These are the things that I would like you to understand about me before you judge me...

    - Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

    - Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

    - Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing. - Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what CFIDS/FMS/MPS does to you.

    - Please understand that CFIDS/FMS/MPS is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

    - Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the excercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously CFIDS/FMS/MPS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, CFIDS/FMS/MPS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.

    - Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). CFIDS/FMS/MPS does not forgive.

    - If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with CFIDS/FMS/MPS then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with CFIDS/FMS/MPS, if something worked we would KNOW.

    - If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.

    In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me the the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outside world... if you don't come to visit me then I might not get to see you. ... and, as much as it's possible, I need you to understand me.

    This is based on an open letter created by Bek Oberin, and has been modified for CFIDS/FMS

  17. HA! No one cares to listen to problems, unless, that is , IT'S THEIRS! My sister changes everything into HER problems, my sis in law says she has fibro also ...NO WAY! I used to have my sister calling me everyday, I got tired of it , didn't answer the phone or call back, its all about HER HER HER, so finally she got the hint and only calls once a wk. Any problem she has it and worse. sigh...people are strange.

    Funny she can run to stores like target, kohls, jc penneys. etc, lots of garage sales, etc, but can't go to the grocery store. ???? Makes her husband go after working all day.
  18. kennysmauhmee

    kennysmauhmee New Member

    You said it, Marta. Unless someone lives with it, they cannot understand it. And a lot of people are afraid of what they do not understand so they hide from it. Sometimes it would be nice for people to just let us vent it out for a while.

    I know I'm a little late replying to these.. I'm new here. But, I'm trying to contribute and become an active member here.. I really need friends who understand and I want to be there for people as well.

    Thanks all.
  19. Empower

    Empower New Member

    Thanks for replying

    Kennysmauhmee, welcome

    You ARE contributing by listening, thank you
  20. senseless

    senseless New Member

    I have just learned not to complain to people outside my family or fellow fibromyalgics. They just don't get it, and they never will. My mom has FMS, and I can remember not understanding when she would get crabby, and we would ask her why, she would reply "I just hurt!" I just didn't get it, until I GOT it. My daughter, who is 26 also has it, and people don't believe or even try to understand her because "she's so young". (I was 18 when my symptoms started and now I am 53). I have to tell you, though, as I have learned not to complain so much, I have noticed more that my daughter's every other word is a complaint, and that does get tiresome, even though I can completely empathize, and I love her more than anyone! Your friend is probably just trying to be helpful, so here is what I would tell her. "This condition that I have is never going to go away and I will have to manage it the rest of my life. It can be very depressing thinking about spending the rest of my life in this much pain and being so tired all the time. Occasionally, it is important to me to just vent. Even though I know it won't change anything, it is important to me that I feel that you hear and understand me. It is too lonely to go through this alone, and sometimes all I need is for you to just listen."
    I hope you can use this~And you can always vent here!

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