Understanding, is it necessary in every contact or friendship?

U

unicorn7

Senior Member (Voting Rights)
I kind of think it is. But I’m getting some advise (and have given it to a family member with a chronic illness..) that not everybody can be understanding and if you judge people too harshly on not understanding your illness or what it means to your life that you lose everyone around you.

What do you do? Can you still be friends if people continuously don’t understand what your dealing with? Are there people here who just ignore the ignorance and try and have a good time on the good days?

I have a lot of good days and on those good days I almost feel normal, so I really understand that it’s very hard to understand that I call myself ill.
But I do feel that it’s an important part of friendship to be believed on my word and I don’t really see how I can be friends with people otherwise?

(This is because I have one friend who I thought really understood, but she said today that as she sees me two times a week doing something active, I can’t really be ill.. I have been very shaken up by this today)
 
:hug:

I think unless they are around you in the same house for several days they aren’t going to get much insight

some people haven’t got much empathy anyway

sometimes if people are too blunt in expressing their opinions but are able to take feedback you can tell them how it made you feel, with other people it’s pointless because they can’t cope with being challenged.

with some people you can’t have the same depth of friendship it’s shallower

If someone is judging you and not making any effort to understand even if you explain maybe their friendship is more of a shallow chit chat thing. You’d need to weigh up whether that’s worth your effort.
 
:hug::hug::hug:

For me, sometimes respect and acceptance can be plenty enough, even if there's no real understanding. Empathy doesn't require understanding either. But it depends on what kind of friendship it is, like NelliePledge says (a shallow chit chat thing or something deeper).
 
I can relate to the shock when someone we consider a close friend who understands comes out with something that shows how little they really do get it. I have experienced this too - the friend of decades who suddenly came out with 'it's all right for you, you like being at home all the time', and another friend who I've known since before I became ill: 'isn't it great that our 90 year old friend is doing her daily exercises - a great example for you to follow, Trish...'.

I was completely floored by both. It rocked the foundations of what I thought was understanding from two of the handful of local people who were making the effort to come and visit me, and made it clear they hadn't a clue what my life is really like, because they only saw me on my best days for an hour or so.

In one case I left it and said nothing because that person had enough troubles of their own, in the other I explained briefly that exercise makes pwME sicker, then left it. It did leave me feeling more alone, as I have been able to maintain so few local friendships through being out of circulation for so long, and being very reluctant to make demands on people when I can't reciprocate.

I think in general when we have such limited capacity for social interaction it is difficult to know what to do with such friendships. In the 2 cases I described, I continued the friendships, as we had plenty of other interests in common and mutual friends and families to share news of, and I appreciated having occasional visits. It just meant I adjusted my expectations of their understanding of my circumstances.

It is hard to know how much to try to explain about our symptoms and limitations. People have varying capacity to understand, and varying willingness to try. I guess in the end it depends how much we value other aspects of their friendship if they aren't willing or able to understand.

I find it particularly difficult when the other person has medical issues of their own, as it can seem like I am saying my illness is more important or serious than theirs if I try to talk about my limitations. I found this in my last job, where one of our team had a potentially serious heart condition - how could I plead my case for special consideration when that person insisted that they not be treated differently?

If we are talking about more limited contacts with people, it's difficult to know whether to bother explaining. I found that with carers who were only coming in for half hour visits to help me shower and do a few chores. I ended up sacking one who was so badly off the mark that she upset me with her comments. Others seemed happy with my simple explanation that ME is a strange condition of limited energy, where the more you try to do, the sicker you get. Sometimes just finding the right words to get the gist across to the other person can help a lot.

Sorry, I'm rambling. Thanks, @unicorn7 for raising this important issue for us. Please ignore any of my comments if they are off the mark.
 
I'm sorry this has happened to you, @unicorn7, it's always really upsetting when a friend lets you down like that.

I used to feel guilty about the fact that I'd have made a terrible friend to an ME patient when I was young. I wouldn't have had a clue, and I'm sure there would have been times when I suspected they were exaggerating.

Now I'm more forgiving of myself, because I've realised it wasn't possible to understand it. Most younger people have little experience of chronic illness or pain; they may have had 'flu or glandular fever, but most can't imagine what it would be like to feel so ill long term. Human memory is very clever about drawing a veil over pain, especially when it's not complicated by psychological trauma, which means memories of illness are often quite vague.

So, like @NelliePledge, I no longer expect much real insight. What matters, as @mango says, is respect and acceptance; if it's a close friend I'd add acknowledgement to that.

Age comes into it a lot, though....if I knew someone in their 40s or above whose attitude was consistently dismissive I wouldn't even bother trying to continue a friendship with them. If they were a younger and less experienced person, I'd be inclined to give them a bit more leeway.

ETA: 'consistently' in last para.
 
Thank you so much for your reply!
@ trish: your comments are precisely on the mark:):hug: Thank you so much for writing down such a long reply, it really helps me that other people are experiencing the same thing. I was just so flabbergasted yesterday, felt like I was going crazy..

It was very hard on me because this is a friend where I do have deep conversations. I really though she did get it and she has been through a lot as well, and I feel I have always tried to do my best to have the most understanding for all her problems as well.
I have had the same thing happen with my best friend a few years ago. We are not seeing each other any more now.
As long as I was being my uber positive self, everything was fine. When I was not feeling well and wanting to talk about feeling very down about my life just passing by. At that point, I get into this weird conversation where they try to point out all the things that I do have. Don’t get me wrong, I am very happy with the things that I do have. So I get in this strange yes-no conversation were they point out the thing I can do and I have to say that that is not in any way a normal life when you can do that one thing but then have to rest for 24 hours (or more) and they sort of try to convince you that it is? I always feel like absolute crap when I hang up the phone after one of those conversations. So yesterday I tried to tell her how it made me feel and she got really angry and said that she sees what she sees (me being active twice a week) and she is entitled to that view on my life.
 
That's really tough to deal with @unicorn7. Only you can know whether that friendship is worth persevering with for the good parts. Maybe with time your friend will reflect on what you have said and learn from it too.

I hope it's OK to give another completely unrelated example this reminded me of.

When I had to give up work I got very miserable for a while at all I'd lost as a consequence. I wasn't continously depressed, I was just having some melancholy days, and understandable sadness at losing a part of my life that meant a lot to me.

A few tears in the doctor's office when I was seeing them about something else, and I was hastily referred for CBT therapy. The therapist's program started with getting me to write a list of some key things I was having negative thoughts about. I came up with a theme of feeling a failure in various aspects of my life.

He then proceeded for the remaining 5 sessions to tell me I was wrong about all those things - he insisted on putting a positive spin on all the things I was sad about, and get me to 'look on the bright side' and reinterpret my 'failures' as 'succcesses'. He was denying my reality and trying to stop me grieving for what I'd lost. Completely awful and took 2 years for me to get over the damage he did and to do the grieving I needed to do and find my own way forward.

I think it's entirely natural for people with chronic illness to feel sad about the things we have lost and can no longer do. It's hard not being able to share that sadness and loss without others immediately insisting we 'look on the bright side'.
 
unicorn7 said:
As long as I was being my uber positive self, everything was fine. When I was not feeling well and wanting to talk about feeling very down about my life just passing by. At that point, I get into this weird conversation where they try to point out all the things that I do have.
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If you ever have the emotional energy, is it worth trying to explain that you're not looking for solutions?

As well as having fun, one of the things good friends do is allow us to talk about our feelings. Their role is to listen and be understanding, without trying to fix us. They don't always feel able to be that listening ear because they're tired or having a bad day, and that's fine; they just need to say, 'Can we talk another time?'.

If a relative had died and you were talking about feeling upset, no-one would point out that you have other relatives and tell you to look on the bright side. That would be offensive to someone who is grieving. The thing is, during some of these conversations you may be grieving your former life, and whilst it isn't quite the same as someone dying, it's still grief. It needs to be recognised and responded to as such.
 
unicorn7 said:
and she is entitled to that view on my life.
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Wow...
Sorry but that makes me angry..... "entitled" to take a view on your life? So viewing it from the outside, a couple of 'snapshots' a wk, she thinks she's entitled to make a judgement about your entire life experience does she? Who does she think she is?!

Obviously you may feel very differently, but just being honest I know i wouldnt want to be being vulnerable around someone who feels 'entitled' to 'take a view on my life'. How dare she?

I hope she comes to her senses.

Speaking from experience, she may not. I am amazed but no longer surprised by how some people consider themselves qualified to make an assessment on whether someone is ill or not, how bad it is etc, whether what they say happens after they leave you is true etc etc etc, its like they believe themselves to be all-knowing.

I'm so sorry you're going through this @unicorn7 it's one of the most painful things when you discover someone you thought understood suddenly reveals that they dont.
It's the lack of understanding, the sense of being in a different reality, that's one of the loneliest things.

As for 'fixers' - the 'lets find something to be happy about' people... it's just a signal that they cant handle it, they want you to feel better so they think explaining why your feelings are not valid will somehow make them go away. I never ever tell those people i am feeling upset, i have a couple in my life and in fact one of them once actually did do this....
Kitty said:
If a relative had died and you were talking about feeling upset, no-one would point out that you have other relatives and tell you to look on the bright side.
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She cant handle distress, other people's or her own. But she's lovely in other ways.

Just as an aside, do you always cancel appointments when you're really bad? I've found that letting people get exposure to seeing me bad occasionally can be useful for their understanding. Obviously that's not possible if the engagement is outdoors, but i have found that if they are visiting you & you find yourself with a bad case of PEM, i let them come anyway sometimes rather than cancel... let them see you struggling to walk, to get a sentence out, to understand what they're saying, they soon change their perspective when they actually see it. (ETA at least most people do in my experience - to be fair it is hard to imagine how ill we can get when they only see us at out best)
 
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It's a fathomless mystery how to get what you need in a relationship whether a doctor, a friend, a relative or neighbor. I wish a friend or relative would say to me (actually one did once): Wow, I can really see how hard it is to be in your body, to have all this going on.

Recently and frequently I promise more social life (even phone calls count) than I can deliver. When I am crashed and overwhelmed, it is almost impossible to tell someone coherently why I cannot do what I promised or what they wish I would do.

But who can really understand and hold and maintain a good understanding of an illness, when even myself in a fit of denial can't.

I just want to be treated with kindness when I'm crashed and in pain. With words of empathy. Sometimes that happens.

Maybe I need to be assertive and coherent in my messaging about my illness. But I fear being abandoned. I could rise above that, I think.
 
I’m really happy, my friend called to apologize! I still don’t really get why she said what she said, but apparently she misunderstood and was angry, because she had the feeling I accused her of not understanding, and she though that was mean because she listens to my stories all the times and tries to understand all the time. I explained, again, what my point was, that sometimes I just want to vent and I don’t need to be pointed out all the things I do have. I compared with her depression: how would you feel if you said you were very depressed this week and I said, I saw you laugh last week, so it can’t be that bad..
She says she totally understand and went on to say that she has the utmost respect for me, because this has been going on for years and she doesn’t know how I can still be positive, etcetc, she was really extremely nice!
I tried to find out why she said all those really mean things, but I didn’t get a real explanation. I just hope this will never happen again and for now, I will just assume she herself had a very bad day or something or something triggered her to lash out, we don’t always know what’s going on in someone elses head.
 
I'm glad it's sorted out. Couple of general points:

unicorn7 said:
(This is because I have one friend who I thought really understood, but she said today that as she sees me two times a week doing something active, I can’t really be ill.. I have been very shaken up by this today)
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If anyone says "If you can do this, why can't you do that?" I just tell them that it's an extremely annoying question for someone trying to manage ME, and would they mind not asking me again. I just don't answer that question.

unicorn7 said:
At that point, I get into this weird conversation where they try to point out all the things that I do have. Don’t get me wrong, I am very happy with the things that I do have. So I get in this strange yes-no conversation were they point out the thing I can do and I have to say that that is not in any way a normal life when you can do that one thing but then have to rest for 24 hours (or more) and they sort of try to convince you that it is?
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If I find myself in a conversation where the other person is starting every sentence with "Yes, but ...", I tend to give it up as pointless fairly quickly, as the other person obviously isn't listening and has their own agenda to push and I haven't got the energy. These conversations can be quite funny in German, because "Yes, but ..." is "Ja, aber ..." which, when both parties are eager to get their point across and talking fast, sounds like "Yaba" - and I find it impossible to watch two Germans starting every sentence with "Yaba" without thinking of Fred Flintstone.
 
unicorn7 said:
What do you do? Can you still be friends if people continuously don’t understand what your dealing with? Are there people here who just ignore the ignorance and try and have a good time on the good days?
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I confess that I've developed an instrumental approach to interacting with other people. What they can do for me enters into my calculation about whether the relationship is worth my time or not, and whether what I get from them is of a nature that I need them to understand my condition or not.

This isn't as heartless as it may seem, for what I get from them may be that they make me laugh, or may be stalwart in holding similar social justice positions as I do. Or I may just love them and can't live without them.

I tend not to expect people to understand my condition. Why? Because I don't understand it myself. When I try to explain it, I realize that we simply don't have words for the severity of the effects of our illness. Those words don't exist. Until they do, how can anyone understand?

I've learned not to let my happiness or emotional state depend upon what another person does or doesn't say or do, except in the most intimate relationships. If I don't give another person an opening----through complaint or sharing about my illness----then they are hard pressed to offer an opinion about it that I'm not very interested in hearing anyway, to be honest.

If someone says something to me that is way out of line, then I evaluate whether confronting them will do any good. (Usually it won't.) If not, I consider what I get from the relationship, and whether it's important enough to me to continue under less than ideal terms. And I take the lesson of what is and isn't safe to say around them.

I try to take an attitude of forgiveness toward everyone in my life, because I realize how imperfect we all are, and how often we make mistakes. I remember how foolish and unaware I was when younger, and I remember that few people have "doing harm" as a goal.

People say dumb and unkind things. That doesn't mean they are dumb and unkind in general---but just in that moment. I remember that I've said dumb and unkind things too, and have caused hurt that I never meant to, and may still be unaware that I caused.

So glad your friend came through in the end, @unicorn7!:hug::hug::hug:
 
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