1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

Healthy Friendships with the Healthy

Discussion in 'Lifestyle Management' started by Dainty, Nov 1, 2010.

  1. Dainty

    Dainty Senior Member

    Messages:
    1,356
    Likes:
    530
    Washington State
    How do you manage it? Or do you no longer try?

    I find that strong friendships really improve the emotional burden of this illness, and I suspect that's universal. Unfortunately, with my limited energy, I often can't be a very good friend, which I also suspect is fairly universal and completely understandable. However, that doesn't change the fact that I need one. Hence the attempts at close friendships with the healthy.

    How does that even work? I've had such friendships before, but they've faded out because the person couldn't take it anymore, which I can understand. I've flat-out told people that I am in need of friendship and have worked so hard to make it work...and it just doesn't. Why doesn't it? Conversations tend to not work very well because I can't seem to manage small talk...all the things normal people casually talk about don't work for me because I don't do all those things, and frankly they seem pretty trivial when I'm in a lot of pain, fighting life-threatening reactions and excited about wearing a gas mask. A lot of people are uncomfortable talking about my condition or hearing me talk about it, but every subject inevitably winds back on my end to how my condition influences the matter. Yeah, that drives me crazy too, at least you aren't the one that has to live with it (I've never actually said that to anyone, but I've thought it). For people who seem open and accepting of it I try to break the ice by welcoming questions and giving them openings to ask about things if interested, but they just act like there's no ice to break and continue ignoring the subject.

    When I find someone who wants a closer friendship with me, I invest in that person. I learn their struggles and hardships, I pray for them, I encourage them, I think of what it's like for them, I share their burdens and ask them about it the next day. I'm told that I'm this amazing friend. And I watch as the weeks and months go by and said person has displayed zero interest in getting to know what my life is like or what my burdens are beyond the cursory "How are you?". In the past I've just let such interactions fade away....this time I tried blunt talking about it, since the person likes honesty. Her answer was that she is interested, she just doesn't have any questions to ask me about it. She's assured me that she'll think of some and write down a list of them and, "next time we talk, I'll come prepared."

    I appreciate her efforts, and this is nothing against her, it's just that I long for a friendship where people try to get to know you without prompting and without having to write a questionaire in order to learn about how your life is upside down and inside out. She knows the basics and just hasn't thought to ask about anything else, even when I've told her it would help to talk about it.

    It's so humiliating to be needy.
    And yet that's what years of isolation have done to me.
    Can anyone relate?

    I've mastered the art of successful acquaintences with healthy people by translating my responses into things they can understand and relate to. I'm thankful for that. But anything deeper and I just haven't figured out how to make it work. It has not been for lack of trying.

    What has been everyone else's experience with this?

    As for those with chronic illness, even other than ME/CFS, there's an instant connectivity that makes this entire thing a non-issue. I'm glad for that. :)
  2. river

    river

    Messages:
    78
    Likes:
    0
    I can totally relate.

    I'm very accomodating with people, I always try to find something they like that I'm interested in too and I always compliment them
    for their accomplishments or show I'm interested in what they have to say. But I'm not faking it. I just learned to be in tune with people
    and to find something I can relate to even with the people who are extremely different than myself.

    Recetly I found a book by Dale Carnegie "How to win friends and influence people"
    What he says is that the secret to be liked by people and beind successful is always showing appreciation for them.
    This, it seems, it's also the secret of the most successful managers, chief, directors.
    But, he says, you must really learn to appreciate others, it shouldn't be like you're pretending, it shouldn't be like adulation that contrary to appreciation
    is fake and plain hypocrisy. He shows many examples of how criticism is useless and always have bad consequences.

    So I don't have problems relating to people of any kind. In fact I can relate perfectly to 8 years old children, have fun being part of their games or
    watching cartoons with them. But that's not "friendship". In my opinion friendship is underrated and too often people think of their acquaintances as their friends.
    Friendship is rare and if you want real friends you can't expect to have many of them. But still, even spending 30 minutes having a conversation with someone is gratifying and enriching. I learned this in the hospital, having conversation with the other patients or the nurses and always finding, even just one thing, we had in common and could have a conversation about with reciprocal interest.

    As for discussing my illness, I actually don't feel the need to discuss my illness with people. I like CFS chats and forums for some comforting words or suggestion but I actually doesn't like to talk about my problems or having friendships that revolve around the topic. I can see how overwhelmed others might feel discussing our health problems with us or how afraid of offending us or of not understanding they might be.

    If I really want them to understand, then I rely again on my ability to relate to others. So I use example they can understand. For example if they're cinema lovers then I explain I feel as they would feel if they could never go to the cinema or if they wanted to go to the cinema and suddenly they feel too sick to. Or if they often catch a cold in winter I tell I explain I feel as they would feel if the cold they catch sometimes never subsides but actually all the feelings like no energy, feeling your legs heavy, swollen glands, poor concentration worsen.

    There's no need to have a conversation about this for hours. Just little bits of information at a time, 15 minutes, then I either stop talking and start listening if I'm too tired to keep talking or I'm the one who say to switch topic. I don't like being egocentric or making the conversation so heavy.

    Even when I meet people the question I ask are: "what makes you happy?"; "what do you remember as the best day of your life?"; "what's your biggest passion?"; "what's your dream?"; "what's your funniest memory?"; "what event changed you profoundly the last years?"...

    This keeps the conversation interesting for months as there's nothing more interesting than learning about the individuality of others, the unique things that happened to them, the unique things they think. That what makes life an adventure and a discover full of variety, not the same objective talks about the same universal things everyone experience in the same way. I never ask people what's their job, how old they are, what schools they did. I cannnot thing of anything more irrelevant as useless to know about a person.

    One day I saw on television an old movie "Blue Lagoon". It's about two castaways, one young male and one young female and how they become best friends, then lover and live, at least initially, a peacefully existence. This made me think that knowing people to have a conversation with is great but that it's even more important to have one friend you would feel confortable living on a desert island with. Hence a person who really has lot of things in common with you, who really is on the same wavelength with you, who really misses you when you're not there and who really wants to spend most of the time with you. I think I have found such a person but she has health problems too. She is actually an asthma sufferer but I think we're so much in tune with each other because of this. I'm not sure I could have such a strong friendship with a person who is totally health and always travelling from beach to beach to surf (I know such a person and she is just an friendy acquaintance but nothing like my true friend)

    I don't think being needy is humiliating.
    Everyone is needy and it's a myth we can do everything on our own and never need others.
    No human being will be so competent in every area of life to never be in need of the help of others.
    Many people are arrogant and pretend they don't need anyone but actually the more arrogant they are
    the more it means they needier than they want to admit. Humble people even those who are so healthy
    they can climb a mountain daily, never clain they don't need others and can do everything by themselves.
    People wrongly make their children believe that you become adults by becoming totally self-sufficient and
    able to do everything on your own; but this is actually what children think of themselves. You become adults
    by admiting you cannot do anything by yourself and you'll always need the help of others.
  3. Dainty

    Dainty Senior Member

    Messages:
    1,356
    Likes:
    530
    Washington State
    Okay first of all, I'm not "faking" interest in people and appreciation for people. That comes naturally. I'm not "pretending" in any way, shape, or form. However, it takes up a huge amount of my energy that is very costly for me and I have to pick and choose which individuals I invest in. Sad, but true. Wish I could change it.

    I always find shared interests with people that we can talk about. Here's the thing, though: I can't act on my interests. So I can discuss a love of languages and desire to learn them, a love of sewing and how useful and fun it is, a love of rock climbing and how amazing and gratifying it is, a love of reading and how relaxing and homey and comforting it is....but I can't do any of those things. So inevitably the conversation goes out of my realm, i.e. when it comes to actually doing it as a current practice. Short-term, for talking with someone once or twice, it works great. Long-term, however, that person continues practicing their interests and has new things to say on the topic because they're actually living it out and I don't have anything new to say on the subject because I'm not living it out. I'm happy to listen and interested in hearing their experiences, it actually helps me because I get to feel like I'm experiencing it a bit with them. But they can't seem to take the one-sidedness of that exchange, some struggle with feeling guilty about it, though I do everything I can to assure them they shouldn't, others just seem to need the reciprocity of hearing my new experiences with our shared interest, which I can't give them.

    I really wish I didn't feel the need to talk about the daily struggles of this illness with a close friend. Here's the thing: I spend all day, every day, working very hard to improve my health with research, lifestyle management, and treatments. I don't do anything else (but how I wish I could!). Most days I have multiple major issues going on at once that I'm trying to figure out and deal with, ranging from life-threatening issues to unbearable pain to wrestling with legally questionable treatment. The major complications change daily and I have to fight hard to keep up.

    In all healthy close relationshps people share major struggles in their life with each other and support each other through it. This one's mine. But for some reason people seem to get the impression that my condition is stagnant, like an amputated leg or something, and there's nothing further to discuss about it. Let me make this clear: I don't like discussing my illness either. But friendship is about sharing life's joys and sorrows with each other, and while I have bundles of joy that I gladly share with everyone I've got a lot of agony and grief too. I'd like to be able to call someone up and let them know I had a life-threatening experience the other day and at the same time be able to crack a joke with them about it and hear them laugh. I'd like someone to know my pain well enough that they can crack a joke about it and I find it funny. I'd like someone to know my condition well enough that I can let myself go with excitement when talking with them about something and they won't reach the conclusion that I must be getting better or feeling better or, worst, faking it the rest o the time.

    So don't get me wrong, I'm not chomping at the bit to announce my symptoms. But like it or not, this illness is a major part of my life and someone cannot get to know me well without getting to know my illness. Even the simple question, "what did you do today?" or "what are you up to?" can only be answered with discussing my illness and can only be understood if someone has background knowledge of it.

    I agree that the word "friend" is overused these days.

    I'm just going to end this post ungracefully because my brain is just not being very accomodating at the moment. :p
  4. river

    river

    Messages:
    78
    Likes:
    0
    I don't know why it's such a problem to them. I love traveling (well, I know I'd love to travel if I could) and I share this same interest with few friends, with the difference that they have actually travelled. But there's enough material to share interesting conversation between my asking questions and my talking about the places I'd like to visit or the documentaries I have seen about certain places and so on. I know married people who share no hobby (the wife likes musical and piano playing the husband soccer and horror movies) but this doesn't make to make their relationship less strong or their conversations less interesting. I know baseball players who are friend with paraplegic people on wheel chair. Still they have no problem or embarassement in their conversation.

    I think it's possible to avoid having every topic leading to our illnesses. I have been in hospital for 2 months, bedridden for 1 year and I was only 17. Right now I'm unable to leave the bedroom. So everything in life revolves around my illness, but the reason I want friends is to have something that doesn't revolve around my ilness; our conversations, our shared interested, the few things we can do together when I feel a bit better (like listening to music together or play a videogame for 15 minutes) Yes I do vent with my friends when I'm really down, just like they do with me. But if we talk about something that I can't do I just say "too bad I can't do that" or "I wish I could do that" ... but that's all.

    True but not all the times. The problem with our illness is that it's a chronic daily thing. We never feel good. I don't even know what feeling good means.
    And if I had to discuss my daily struggles with someone I know I would overwhelm him/her, in fact becoming the confidant of someone like me would be a major responsability; I know such a person would always feel nervous for fear of telling the wrong thing, for fear of admitting he/she doesn't want to always have to deal with sadness of my existence, for fear of not understanding. Don't get me wrong, I'm not saying that's what you implied with your post. I'm just saying.
    It could may be that you actually just wanted someone to vent your frustration of a very bad day but found no help or sympathy in the person you were talking to.
    In that case it's the person fault.

    But we need balance in everything. I couldn't deal with a friend talking about his/her divorce or family problems all the times, everyday. Again I'm not saying you talk about that or plan to talk about that everyday, just giving my opinion on a theorical situation. I also understand if they have nothing to say on the subject. What other can they do except listening? When a friend of mine was really sick and din't know why the only thing I could do was: saying I was sorry, suggest him things he could do (but that's just because I'm knowledgeable about health) and trying not to sound overly pityful and patronizing while trying to change conversation and talking about something that would cheer him up.

    Why looking for that in the healthy ones? Call me if you want. There are so many people who can understand and relate to you, why expecting people who are extraneous to all of this to know our pain so much. I get mad when people make ignorant remarks but I don't when people claim they don't understand, because I sympathize with their not understand and don't blame them. I don't think I will ever relate or know the pain of someone with anorexia or someone with osteoporosis, then why should I expect others to relate or understand the pain of my complex and multi-factorial disease?

    When I'm asked what I did and all I did was sleeping or laying on the bed or reading I either say "nothing interesting, what about you?" or I just say "I actually slept for 12 hours" or "I actually stared at the wall for 10 hours". And then I can either say "as a matter of fact I'd really like some conforting words about this or to remove a burden" or say "anyway, let's talk about something more interesting". I don't want to scare people away and I do realize I could scare them away and I would understand them perfectly rather than blaming them.
  5. Dainty

    Dainty Senior Member

    Messages:
    1,356
    Likes:
    530
    Washington State
    I know you probably didn't intend for it to come accross this way, but could we please try to steer clear of comparisons? The (intendeed or unintended) implication is, "I'm worse off than you and if I can do it you can too." That message isn't helpful for me right now, and may I remind you that you don't know how old I am or the details of how severe I am or have been.

    See, I don't have that. I don't have friends to vent to when I'm down. I have acquaintences that will kindly listen if I approach them and say, "I'm having a bad day and need an ear" but it is not the kind of relationship where they ask about it later or anything of the sort. And since they communicate no further interest about my welfare in the days, weeks, and months following such an incident I begin to feel like a beggar seeking crumbs when I feel the need to lean on someone, because I always have to spell it out and initiate everything and although they kindly listen there is no initiative on support afterwards.

    I don't vent my frustration, I find that a waste of time and energy and it scares people off. However I would like the opportunity to share my truimphs, struggles, pain, and joy with poeple....am I just not communicating clearly or....I'm very confused as to why we're misunderstanding each other, or else why that would be too much to ask of someone.

    Right. Yeah...I'm saying at least once would be nice. I don't even have the "once" right now. With anyone. I speak in generalities, and if they are interested they can ask. As in, in response to how I'm doing I might say, "I had a really hard day today." They generally say: "sorry to hear that." The end. Or I say, "I'm really excited about a possible treatment." And they say, "That's great!" and then change the topic. When asked what I've been up to I might say, "I've been doing a lot of research on health stuff." To date, not a single healthy person that I can recall has ever asked what on, not even the ones really into health research themselves. I don't want to be talking about my illness all the time, but every once in a while to have a little interest shown in what is eating me alive and how I'm dealing with it would be nice. Is that really too much to ask?

    Sometimes it can be very helpful to talk with someone who doesn't assume they can comprehend what you're going through. I find it exceptionally difficult when another PWC or other person with chronic illness thinks they know what I'm going through but their words demonstrate otherwise. I'm understanding of the error and don't try to correct it because that just makes things worse, but it does make me feel quite lonely at times.

    I don't expect healthy people to avoid accidental blunders of saying the wrong things, I don't blame them for that in the least. I do blame them for not trying. Expesially when I'm welcoming them to try, urging them to try, or sometimes flat-out begging them to try.

    Another thing, as I stated earlier, is that healthy people have the energy to be the kind of friend that PWCs can't be, though no fault of their own. I understand when PWC don't have the energy to talk, or listen, or write, or are going through such a rough time themselves that they can't handle me leaning on them. I get it, I understand it, but that doesn't resolve my dilemma of needing someone. Healthy people don't generally have these issues, the main factor is busyness and while they do have very legitimate struggles and dilemmas these are generally transient enough that I can handle them leaning on me for that period of time. I can't always handle a PWC leaning on me long-term. Wish I could, but it doesn't work. I fall over.

    The thing is, I do interesting things all day. I pursue my health with a passion, and I work hard at it and find out fascinating things. My days are very dynamic, and i want to share them with people just like other people want to share their days with me. I realize the topic of extreme health issues is too much for some people, and I understand that. I don't blame them for that.

    Am I in the wrong, am I expecting too much out of people? Perhaps. There's always that possibility. But I can't see how wanting to share what I've been up to lately is an unrealistic expectation. I can't wrap my brain around the fact that people who care about me and pray for me and tell me to let them know if there's anything they can do won't bother to initiate concern or questions into how I'm handling life and what's the latest on my health issues. I don't expect everyone to do this, but no one?

    I realize I could be contributing to the problem. I used to expect it to clear up on its own. For years I just thought it was a matter of not having the right people in my life. Now I'm working hard on taking the initiative, expressing there's a need, trying to find every way that I could positively influence the situation. That's why I posted here, to see if anyone else has found things they can do to "unstuck" friendship issues influenced by this illness.

    You seem to be saying you don't have such issues, and I'm happy for you.
  6. river

    river

    Messages:
    78
    Likes:
    0
    I don't think I'm worse than you, by the sound of it you're worse than me (I have never had a life threatening epxerience, or maybe just once)
    The comparison was between me and the healthy ones, just to point out that, unlike theirs, my life revolves around an illness. If my friendships
    revolved around my illness too, I would scare people away and be alone, because since their life doesn't revolve aorund an illness they cannot
    tolerate the burned and feeling so overwhelmed nor I expect them to.

    My friends don't communicate any further either, in fact I don't communicate any further when they have a problem. When a friend of mine is sick
    I just say "sorry about that, is there anything I can do for you". It's up to them to show an interest in discussing their problem further. In fact I have no way
    to know they want to discuss their problem further and in fact most of the time they don't want to and prefer to change the subject.
    If I want to talk about something that happened to me, then I just ask "can we please talk about something that is really worring me?"
    If they forgot I have been very sick and want to talk about it then I say "do you remember I felt very sick, I actually need to talk about someone of what happened"

    I don't expect people to hug me, I just ask for a hug when I need one.
    To me a good friend is the one who hugs me when I ask to be hugged, not necessarily the one who understands I need a hug without me asking for it.
    I consider myself a very sensitive person and yet I have often been criticized for "not reading someone else mind" when all they needed to do was asking
    me clearly what they wanted.

    I really don't care whether other shows any interest before I ask them to, the only thing that matter is that they're there when I ask them please
    to listen to me or confort me. And when I ask them an opinion about a treatment or about a bad episode I had, they often say (before accepting the conversation)
    "I don't know if I'm in the position to giving you an opinion or discuss these things, maybe you should talk with a doctor instead" So I can actually see they're overwhelmed by the responsability. What makes them real friends is welcoming my help and attention request in spite of their fear or embarassment, not whether they ask first.

    Of course if they ignore your request and just say "no thanks, the stuff you talk about is boring and I don't want to help you" then they're just egotist and mean people
    and it becomes a matter of finding better individuals.

    Why caring whether they initiate concerns or questions. It shouldn't be, imo, a matter of who initiates what.
    I don't care whether my friends forget about calling me for a month, what matters if that if I call them they're willing
    to chat or to help me. I'm not the kind the person that would say "since they haven't called me in a month, they're bad friends
    and I won't call them till they call me". Who cares, if I want to hear their voice more than they want to hear minre (in that particular
    period) than it's up to me to call them, tell them I was missing them and I need someone to talk to.

    I have less of those issues because I have never heard a friend or even acquaintence telling me "what you want to talk about is boring and I don't
    have time for you". And that's the only thing they could say to really hurt me. If they forget to hug me, forget to ask me how I feel, forget to pay attention
    to my discoveries, forget my birthday ...
    ... I don't care at all, if I want them to remember those things then I just tell them "hey I need a hug" "hey, I need to talk about what happened to me"
    "hey, I made a great discover, want me to tell you about it?" "hey, tomorrow it's my birthday"...
  7. Tammie

    Tammie Senior Member

    Messages:
    760
    Likes:
    9
    Woodridge, IL
    Dainty, I just quickly read thru this and am too tired to respond properly, but I wanted to let you know that what you wrote REALLY resonates with me. I can understand the responses, to a point, but I also feel like you don't seem to be getting heard here.

    (River, that is not a knock against you at all - it sounds like you have come to a very healthy place of dealing with being sick and having friends that serve your needs - and you theirs......it is just to say that somehow I think you are looking for something very different and/or are getting something very different from your friendships than Dainty is....or for some other reason, you two are just coming at this from very different places.....nothing wrong with that, but since I am coming more from the place where Dainty is, I am finding this conversation to be another source of disconnect and we have far too much of that already)

    anyway, Dainty, I wish I had answers for you & I don't, but I do truly understand......I used to be such a good friend and to have several close friendships & that loss is one of the things that hurts the most about being sick......we do need others for all sorts of reasons and it is ok to want people to be able to anticipate some of your needs some of the time, instead of always having to ask them to listen, ask them to try to understand, ask them to actually seem like they care, etc (and the fact that they don't do this can often feel like they don't care, even though that may well not be the case at all)......and it is hard to not be able to be a good friend back, too - really hard
  8. river

    river

    Messages:
    78
    Likes:
    0
    I'm not just telling my story here, that would be useless
    I'm actually genuinely trying to answer Dainty questions (I did explain how I manage it) while trying to help her by suggesting a different perspective. A different perspective saved me from a life of grief, resentment and feeling of rejection and abandonment and I'd be very glad if it could help others too. Let me point out once again that I'm not trying to hijack Dainty originaly intentions with this post or to claim that she shouldn't have such issues or to boast about my relationships (they're nothing to boast about anyway)

    I think very few people in this world can anticipate another person needs and actually when they think they know those needs they often fail or start mistaking their needs for those of others. I have known people, who didn't have any illness to deal with to begin with, that lost many chances to have friends because of this expectation and in fact they lost my friendship because of this expectation while I tried to explain them many times that I can't read their mind and that even if I tried I would misread it or ending up pushing my will because I think I know. In fact not even wives or husbands anticipate the needs of their partner, it happens only in movies and the more the relationship becomes a guessing game the more it suffers and gets weaker. Asking is so painless and easy, it's what we learn since we're babies; mothers are often said to have a special connection with their babies and still even they can't anticipate their needs and rely on their crying, their nodding, their tantrums ... in other words their spelling out what they want.

    When I put myself in other people shoes, I realize I would be as clueless as they are as to what my needs or expectations are.
  9. Orla

    Orla Senior Member

    Messages:
    446
    Likes:
    38
    This is my take on this, if I am understanding this conversation.

    I think it is partly an issue about reciprocity, or lack of it. It is normal in a relationship to expect give and take, but a lot of the time it can end up that one person is doing a lot of giving and the other is more of a taker. This could happen in any sort of a relationship but there are things which can be a specific problem for us I think.

    So it would be normal to expect some reaching out from a friend, and not to have to constantly ask for something that they would give more naturally in a relationship with a healthy person. I think it is normal to expect the person to make a bit of an effort and to reach out now and again without having to ALWAYS ask for it.

    If you have to constantly ask for basic things then it can feel like the other person doesn't care. It can feel like you are always asking for crumbs off the table, which seem to be given relatively begrudgingly, as they almost have to be forced out of the person (or it could feel like that). It can also make the person (or even both) feel like the sick person is the taker in the relationship even if they are more of a giver and putting more effort into the relationship (certainly in terms of the amount of energy they have overall).

    I don't think it is a question of expecting the person to anticipate a lot of needs, or every need or anything. But I think it is a question of wanting the person to feel an interest in ones life.

    About the phone call thing which you mentioned River. I found it did get to me if I was the person who always has to ring as it made me feel forgotten the rest of the time (which I probably was as otherwise they would ring). It was also awkward as it meant I didn't know when was a good time to ring for them so I might annoy them by ringing at a bad time. I have found to some extent that at least sick people know just to say it is a bad time, but sometimes healthy people don't (even if I ask if it is a good or bad time), or one can end up having a half conversation when you really want a proper chat. Also a lot of the time I would get the "ring me when you are better", or "ring me when you are able to go out" even when they knew going out was an ordeal. I suppose for the last one it is understandable in some ways that they did not understand the desperation to have a chat, and that a relationship by phone is better than none.

    But the phone thing meant for me that I didn't know if I was bothering them more generally but they were too embarrassed to say and so on. Nowadays I expect little or nothing from most healthy people to avoid dissapointment.

    I actually lost one friend who I thought was a good friend as I began to notice after I had a relapse that they never called around or rang, and I didn't know if it meant they didn't want to be my friend anymore but were too embarrassed to say so, and I felt awkward with the friendship because this created distance, and I felt I couldn't lean on them at all (though I would be careful not to lean too much) or talk honestly with them. So after a few unanswered and unreturned phone calls I stopped ringing and I never heard from the person again. I probably wouldn't do this now, out of pure desperation for contact, but I think it showed the shallowness of a friendship I thought was quite a good one.

    Anyway not sure if I am explaining myself properly but these are some of my thoughts on the subject.

    Orla
  10. JAXintheCity

    JAXintheCity

    Messages:
    97
    Likes:
    0
    Philadelphia, PA
    I often feel like a 'bad friend.' I have a lot of trouble getting the energy to call people back, and I have absolutely NO social life anymore.

    But for me, perhaps naively, I still feel secure in my friendships. I know they still love me and I love them. I bet many of your friends miss you, and would love to hear from you!

    Your post actually made me realize that one thing I can do to improve my frequency of contact with my friends is to try to call at least ONE of them every week to catch up. (Not the same friend, but rotate it...) So, thanks for that!
  11. Tammie

    Tammie Senior Member

    Messages:
    760
    Likes:
    9
    Woodridge, IL
    I absolutely understood that you were trying to help......did not mean to imply otherwise at all. Like I said, I think that you have found a healthy balance in your relationships that seems to serve you and your friends well. I also appreciate that you were trying to pass that along. I just sensed a bit of frustration (maybe just in myself, but I think some was coming from Dainty, too) in that you two seem to be not quite getting where one another are coming from.

    As to the thing about anticipating needs, I get what you mean, but I also think that it is completely understandable to not want to always always have to ask for every little thing in a relationship. That does not mean that one should expect the other person to be a mind reader - just that a consistent and complete absence of any sort of reaching out gets really old really fast. I also may not have explained what I meant very well bc I have been crashing and very foggy lately. I think that Orla explained it very well in her post, though.
  12. river

    river

    Messages:
    78
    Likes:
    0
    This is what I disagree with. To me a "giver" is someone who gives, not someone who takes the initiative. Someone is a taker and not a giver, in a relationship, if he/she finds excuses not to be with you or always deny his/her help. But someone doesn't become a taker rather than a giver just because he/she is less suited or in a worse position to take initiative.

    I have a friend who is definitely a giver. He gave me a lot of support, made researches for me, spent nights with me at the hospital and even gave me 500$ when I needed them and of course I asked for them, forgetting about my stupid pride which is the most destructive thing ever. I haven't heard from him in like three months. He didn't call me but I didn't call him. In fact we both had other things going in our life. But as soon as I remembered I called him, not thinking about irrelevant things like whether he calls first of I call first, I wanted to talk to him and I took the initiative. And he was very happy to hear from me but also said that it doesn't matter if we hadn't talk in three months, it was like we had just talked on the phone the previous day because when you have a real friend, the things you have in common and share are a lot more important than pride and insicurities and even of time.

    He showed an interest by giving me the 500$ when I needed them, spending the night with me when I needed it, making researches for me when I asked him to; he doesn't need to be the one calling first or asking me details about my health before I initiate the conversation to show an interest. It's pretty irrelevant whether I call him more often (since I spend way more time at home than he does) or if I have to remind him something (considering I don't have as many duties as he has) or whether I'm the one who takes the initiative to ask for help, to discuss my problems, to make a phone call. I had learned quickly I had to kiss my pride goodbye if I wanted not only to have meaningful relationships but also if I didn't want to be unfair with other people who have a far more erratic life than I have. Yes, I am sick, but they're always running from one place to another while I sit on the bed all day.

    I don't think he didn't want to be your friend anymore. In my opinion the one remembering the other should be the one to call. There's no need to think "I won't call him/her till I he/she doesn't call me, so I will see whether he/she really cares about me" This kind of stuff doesn't even work in romantic relationships, where it creates the basis for very fake and childlike dynamics.

    Another thing I have learned is to always be open. Expecially PWCs shouldn't really keep their resentment for themselves as it (like any kind of bad stress) makes the symptoms even worse. Anytime I think I have been hurt by a friend, I was shocked by someone attitude, I'm not sure about a person intentions or a comment they made; I simply discuss the matter immediately and openly. The outcome is always positive, when you speak honestly and openly to people, instead of projecting in your mind... often creating a trial without a defensor. I'm glad I learned this soon as I realized I have needlessly ruined great relationships because of this self-ruminating insecurity. I was not giving these people the benefit of the doubt and I was always wrong. They loved me, they just had a different way to show it. And actually since I was the one always in my bedroom and with a lot of time to make a phone call, I was actually acting like one whose love for his friends should be doubted, since I had a lot more chance to make the call then they had, but didnd't because of pride of because I neurotically thought they needed to call me first to prove me they cared.
  13. Orla

    Orla Senior Member

    Messages:
    446
    Likes:
    38
    Hi River, the example I gave was from years ago, and I would have a different approach and attitude now to some extent, and more experience of how to deal with people (and how to weed out "unsuitable people" quickly!). But some of those earlier experiences still hold true, and they are very common for people who have a chronic illness, or even some other type of crises in their lives. I am more wary now of putting a lot of effort in with healthy people (unless I think we will really get along, and that they can cope with some of the limitations of the illness) as they can dump you like a hot potato very quickly. I think a lot of it is that we are just not directly involved in a lot of activities in their lives so we are either expendable or get forgotten about.

    This might also be partly an age thing as I find it is easier to associate with people a bit older than me, or even my own age as it is now as opposed to when I got sick initially, as their activities tend to be more sedate and they can be more appreciative of a chat without other activity. Part of my problem here as well is that I live in a place that people come to live here for a few years and move on so that causes some problems.

    I always make an effort to see something from the others point of view (believe me I spent years making excuses for people), so agree that it can be easier in some ways for us to make calls, but I am talking about situations where it is ALWAYS one-sided. There is a big difference in a slight imbalance in effort and a total imbalance. And everyone (well most people) try to pick up some signals in terms of where someone's boundaries and limits are for the friendship, so trying to read this can sometimes be difficult, especially if the person is not reciprocating. And who is to say that their lack of reciprocating is not them telling you that they are not that interested in you as a friend? Or that they only want a more superficial friendship? Or that they cannot handle the situation? And people are entitled not to want to be someone's friend if they don't want to be. Unfortunately often (where I live anyway) people will throw hints about this (not wanting to be close friends) with their behaviour rather than come straight out and say it. Although again there could be a bit of an age issue here.

    I think to some extent that we are talking at cross purposes and comparing different things. The phone call thing was just an example of a wider problem or someone being thoughtless, careless or not making an effort to include a sick person in their life. I just wanted to tell Dainty that I had felt some of what she felt on this issue.

    The example you gave of your friend is not an example at all of what I was talking about. In some ways it is the opposite of it, and more I think of an example of what people are saying they would like in a relationship with a healthy person.

    The friend you mentioned sounds great. He was really there for you in an exceptional way. It would seem petty to be criticise him for not ringing in a while in those circumstances, as it would seem a minor thing in the greater scheme of things, so I am not surprised you don't. But what he did was much beyond what many people's healthy friends would do for them (like in a different universe of beyond).

    In a funny way as I have been in a relationship recently I now notice more what some (mostly past) friendships were lacking, or how little value some people put on the friendship. If people care they do make an effort, even a little effort some of the time. I know a relationship is different to some extent, but it is a pity some people do not value friendship more.

    I hope I am not coming across all cross about it, as feel quite distant from the earlier experiences now and quite philosophical about it. I gave up expecting much in terms of friendship from healthy people a long time ago, so focus on friendships with people will illnesses as I have found them less of a struggle, more rewarding, and easier to maintain.

    Orla
  14. river

    river

    Messages:
    78
    Likes:
    0
    Hi Orla,
    I think the only way to know is to ask them. That's what I mean when I said that I've become extremely open and honest about what bothers or hurt me and this has improved my friendships like 100%. If I see a friend doesn't seem very interested in me lately I ask him/her "do you really want to be friends? are you tired of me? are changing your priorities" As long as it's an honest reply I accept everything but most of the time they actually are surprised I thought that of them and just apologize for not calling or neglecting our friendship but they had their problems too and not much free time. I just think there's no point in guessing and guessing whether people care about you while ruminating in loneliness is also, in my opinion, very unhealthy and stressful. And as long as I'm sure they care, because of what they did when I asked their help or when they actually found the time to spend time with me, then I don't care if the relationship is really one-sided with me making all the calls and remembering to say hi. A friend of mine always says that friendship is about what happens when you're together, not how often you're together or how often two very busy people remember to be together. And indeed a person shows me his/her care more through his/her sensitive, kindness, consideration, sense of humour, depth even if he/she calls me just once a year than through calling me every week but lacking all other aspects when we talk or are together.
  15. Dainty

    Dainty Senior Member

    Messages:
    1,356
    Likes:
    530
    Washington State
    River, I think you're misunderstanding something. It isn't a matter of testing how much the person cares about you by refusing to take the initiative; a lot of the time we're too ill to take the initiative so in order to avoid overburdening ourselves in the long term we need someone else to take on some of that load. It can also become simply too emotionally taxing to keep calling at bad times, even though the person doesn't claim it's a bad time (which wastes your energy) or calling and they don't pick up (more wasted energy) or calling and talking but not having your needs met because the person is distracted doing something else. And yes, honesty is very important, and yes, you can have honest conversations with said person about what you need and how they can help you and how their actions affect you. I've been down that road. It didn't end well. When every week or so you're having another brutally honest painful conversation about the exact same thing that gets really old really fast.

    One great friendship that I had basically ended when the reciprocity of initiative ended. I continued to call regularly for about two years, but I often called at bad time, often got the answering machine and the few times I did get through she would gush about how I was "such a faithful friend" for calling, as if it was something unusual that she wasn't expecting. After two years of her always exclaiming about my faithfulness with every call I did begin to think, "So, what does that make you?" It was taking up a huge amount of my energy to call, and she had clearly moved on because she seemed very surprised to hear from me each time (again, talking years) and had ceased all initiation. Did I blame her? No, sometimes people's lives just go in different directions and friendhships fade away; that's life. But I had to be the one to recognize that it was fading and let it go, and we're now very rare acquaintences. From what you're saying it seems that you would still be continuing to call, and that you consider my actions "fake and childlike". From my perspective I discerned that things had changed and it actually would have been breaking an unspoken social code to continue calling year after year while she politely and kindly tolerates it.

    I agree, definitely.

    I'm glad that's been your experience. It hasn't been mine. I still agree that honesty and openess is best, but sometimes it has a very high price tag.

    River, I understand you're trying to be helpful, but your "tone of voice" (as much as type can communicate) is coming across as insulting. Using words like "neurotic" and "childlike" and "fake" when referring to actions that I or another person here has described sends the message that you think we, as people, are neurotic, childlike, and fake. And maybe you do think that, I don't know. I do know personally your responses have been stressful and hard to swallow. I'm striving to be open to any correction and carefully consider any criticism, but I feel like you are misunderstanding me by projecting your past experience onto me. If I had a shred of pride regarding friendships I wouldn't be currently groveling on the floor begging for them. Do you really have to bring me lower?
  16. river

    river

    Messages:
    78
    Likes:
    0
    I was actually referring to my actions, to what I was doing and to how silly it was when I think about it. Also saying that an action is neurotic or childlike, doesn't mean that the person doing the action is neurotic and childlike. To me there's a big difference between "you are bad" and "what you did is bad". There's no perfect person on this planet and no person I know who is not childlike or silly or hypocritical at least once in his/her life. Anyway, I was talking about me. And I actually consider myself kind of neurotic, it's not my fault I would lie if I didn't admit the cognitive impairment I get from daily brain fog and mental fatigue doesn't make me a bit neurotic.
  17. Dainty

    Dainty Senior Member

    Messages:
    1,356
    Likes:
    530
    Washington State
    Agreed. Now what if you have communicated your needs and expectations already? What if you had repeatedly communicated your needs and talked with said person about meeting them and reached mutual understanding and agreement on it? And said person still continues to ignore the need? That's what I'm talking about when I refer to "begging".
  18. river

    river

    Messages:
    78
    Likes:
    0
    When you're friend with an healthy person, you don't share the pain and frustration of sickness.
    That means there must something else that keeps the friendship together.
    I would focus on that thing, whether it is fading, whether something changed, whether you or the other person have sidtracked too much.
    All I know is that friendship is as rare as true love. People who say they know everyone in the town and have like 100 friends, actually have no friend at all.
    A person could consider himself lucky in my opinion if he can find one true friend in a 90 years old existence.
    And we're so alienated, as a society, and segregated into insular groups nowadays that it's harder and harder to have chance to meet a fried, let alone when you're sick and almost invisible to the rest of the world.

    My friendships with the healthy are all based on same interests. That friend who gave me the money, we have the same passion for musical, although he has seen lot of musicals and I have never seen ones (except on tv) But this isn't preventing us from share the experience and the knowledge. With another friend I share the love for languages and with another one the love for animals. I know that if these things would disappear from our conversation or from our interests, our friendship would too.

    In my opinion healthy people are not more shallow or miser. It depends on the individual. I have met as many good healthy people as horrible sick person with debilitating diseases. And I wouldn't let one or even more bad experience with people who didn't care (not paying attention while you're talking on the phone is terrible) or had so many "bad moments". I'm a very flexible person and I feel good only around flexible people. I can't stand whiners who act as the world is ending if they miss 15 minutes of sleep, if they delay their dinner by 5 minutes, if the water of the shower was too cold or too hot. It's not normal for people to have so many bad moments.
    I mean if I'm calling them during a lesson or work or while they're in church or cooking then I understand it's a bad moment but they're usually very politely tell me so.

    But I still don't consider the reciprocity of initiative so necessary. The problem here is that a friendship is something so unique and individual that so many different factors are involved. So you may actually describing people who are both poor reciprocators but also poor friends, shallow and egotistic. While I might be talking about people who are bad reciprocators or shy or unable to take the initiative but are also very good friends.

    No, fake and childlike is when I didn't call because I thought I needed an evidence that they cared and that evidence meant I shouldn't call until they do it first. And most of the times they weren't calling me for fear of bothering me since they knew I needed more sleep time and lot of rest through the day. But yes, I would still be continuing to talk; it's up to them to tell me openly "I don't want to be your friend anymore, you're bothering me, we don't have anything in common, I don't care about you" or it's up to me to ask whether they're still interested in my friendship and whether my intuition that I'm always calling at the wrong time and they're bothered by my calls is right. I might actually need to push them a little, show they can trust the fact that all I need is honesty and the truth will never hurt me and after some coaxing they usually tell me honestly, I can tell from their more serious and less frivolous tone of voice, what they think ... but most of the time what I thought, was wrong (I wasn't bothering them and they actually didn't want to bother me, they had just been very busy, they were waiting to make a come back and spend more time with me after resolving all their issues, they were actually depressed and had withdrawn from social life...) My mind flies a lot, I remember once thinking a friend was not really interested in chatting with me and I should actually say goodbye to our friendship. Turned out he actually had connection problems and I saw him online even if he couldn't reply to me.
  19. river

    river

    Messages:
    78
    Likes:
    0
    But they might actually be very bad at taking the initiative.
    Since I'm often in bed and often can't leave the bed, I give my friends the key of my house so they can come whenever they want.
    Although I have repeteadly told to them that I'm actually happen if they come often using my keys, that I don't consider it unpolite of what and I have
    actually begged them to overcome their embarassment at entering in my house as if it was theirs, they always keep avoiding coming to my house when
    no one is with me because they don't want to open with my keys. And althought I have told my friends I don't mind if they have questions about my sickness,
    if they want to talk about it or even joke about it, they never deal with the topic. I have friends who are shy about using my bathroom and even one who doesn't
    accept food from me unless I eat it too (she thinks it would be unpolite to do otherwise but she actually gets on my nerve with this)

    It doesn't matter how strongly we beg people to be more at ease around us, to take the initiative and so on ... if by their nature they're not good at taking the initiative
    or initiation an interest in your situation (although deep inside they're interested if not dead curious) there's nothing we can do to change them. Just like some people are
    absent-minded and forgetful by nature and no matter how you beg them to please remember an important thing, they don't and there's no much they can do about it.
    But that doesn't mean they're careless or shallow.

    Alternatively, they're just not good friends. If they're in a position to reciprocate and often do that to others but fail to meet your needs and expectation because of their egocentrism, laziness and what not ... then they're not good friends.
  20. Dainty

    Dainty Senior Member

    Messages:
    1,356
    Likes:
    530
    Washington State
    I don't have responses to all these quotes, but I wanted to quote them because they were helpful and resonated with me, and I wanted to communicate that...and I bolded the things that really stood out to me.

    That's great! I don't think it's naive to be secure in your friendships, if they are established and strong. For me it's when starting over from scratch....and continuing to start over from scratch for years....that the insecurity creeps in.

    Yes.

    "Out of sight, out of mind" seems to apply.

    As a quick note, I'm really happy for you about the relationship. :)

    I have also found that friendships with those with illnesses tend to be much easier. In fact, in my experience so far it's kind of like instant friendship with no expectations and completely on the same page, which is really nice. Yes, definitely easier.

    You know, the other day I was trying to analyze why I feel like I need friendships with healthy people. I do have great friendships with other ill people, with no complaints. Though I'm only able to communicate rarely and they're only able to communicate rarely (and I seem to forget about them inbetween...that's painful but honest) it is quite a blessing. But I came to the conclusion that for me one factor is that by being close friends with a healthy person or two, when I talk with them I feel more "normal". And I find it much easier to help with their struggles and burdens.....to anyone reading this that I'm PMing I don't want you to take that to mean that you should share less with me at all. Not in the least. However, just as a different aspect of healthy person relationships vs. ill person relationships, I find that listening to an issue totally different from my own is more refreshing because it takes me out of myself, whereas listening to issues that I can relate to all too well takes me back to my own problems. I find that both are helpful...on the one hand, commiserating can be very beneficial and when you encourage someone else on an issue then you also have no choice but to turn your own encouragement onto yourself, which is a nice little perk. :D

    One the other hand, sometimes it can become depressing to be surrounded by people who share your problems, I know for me it can start to feel like the world is an awful place and everyone's got problems and no one has answers, and it can become a real downer. That's when friendships with healthy people can really help....to hear someone tell about how great their day was and share all the details of it, or to listen to burdens that you totally can't relate to but you recognize as legitimate and are able to be that shoulder for, or to try to explain your illness with someone who cannot comprehend it just to get a good in-your-face reminder that this struggle really is out of the ordinary, that life in general isn't really so bad, that you're just "special" that way. When I've had them, close friendships with healthy people were my heart's window into the world of the healthy, and it was so lovely to look out of. But the past few years since I've only had acquaintences, good acquaintences, but acquaintences nevertheless, that window has been almost completely closed to me and I desparately long once more to see the view.

See more popular forum discussions.

Share This Page