Understanding, is it necessary in every contact or friendship?

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)

 

I'm sorry this has happened with your friend.
I can relate.
Sending best wishes your way.

 

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'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 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.

 

@Kitty, I agree with you. I would not have been such a good friend. I was on top of the world and although I think I would have tried to understand, probably the friendship would have faded away.

 

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.

 

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....

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)

 

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.

 

@unicorn7 I saw this and couldn't help but think of this thread

 

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.

 

Well that's great to hear!

 

So pleased for you!

We all make mistakes, I'm so glad it worked out for you both

 

I'm glad it's sorted out. Couple of general points:

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.

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.

 

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!