Friends not so understanding....

[lauralee77]

I don't think my friends understand what I go through with this disease at all. They think that just because I look okay on the outside, I'm feeling just fine. They don't understand when I say, "I have to go now. I need to get to bed." or "I just don't feel like doing anything today." I guess part of it is that I don't talk about my lupus much to them because it sounds like I'm complaining if I mention all the aches and pains I have. The other day I had called my friend and left her a message telling her I had really been sick lately and out of work and when she called me back her response was, "Well, you sounded just fine on the phone" I don't think she meant it in a demeaning way, but she truly doesn't understand the nature of the beast. When I get really sick like this, I feel isolated from my "normal" friends. Thank God my husband and parents (who have read up on lupus when I was diagnosed) understand what I go through.

[Shelleyshells]

Lauralee,
It is hard for friends to understand. It's hard for me to understand and I have lupus! I have been blessed with some very good friends and I have pulled away from people that I thought were my friends.

Have you read the "Letter to the Normals"? It is under Family and Friends on the message boards. It would be good for you to print it out and give it to them. It helped me as well, because this disease for me is so confusing.

I have to say (in rebellion! :tantrum: ) that I am NORMAL! I just happen to have lupus.

Now, I know that there are those who know me that would disagree! :lol:

I am so glad that your husband and your parents support you! :flowers:

It's really good to come here for support as well!

:love:
Shelley

[alobreto]

Hi, Lauralee! ;)
One way or another, most people eventually find out that true friends are quite a rarity in life. :o I count myself as fortunate to have learned this very early. I think the things I've experienced have been less stressful knowing where I stand with people. :thumbs:

I can count on the fingers of one hand the true friends I have and I feel very rich indeed, because each of them has a heart of gold. :love:

That is not to say that finding this out isn't painful. It , by golly, is VERY painful! :(

When I came to terms with this situation, it helped me to look at it from the perspective that NOTHING had really changed, except the fact that I was now AWARE of how rare true friends are.

I hope you're able to get past this pain quickly. :hugbetter:
Best regards,
Angela :flowers:

[jude mack]

Hi Lauralee

I find most of the people I considered friends, weren't really. I have a few close
friends who do understand, and a couple who try, but just don't get it. It isn't easy, most people are just too busy with themselves or having fun, to understand. So keep the good ones and let the others go. It will be less stress for you and a couple of good friends are better than a bunch who will never understand you.
Take care. Love Jude :flowers:

[nicole7]

Hi Lauralee
I'm sorry that you feel so misunderstood by your friends. For me personally I find that I have to find the right time to explain to each friend individually (and in a different way for each) what's going on with me. When I got my sickest is when I really learned which friends were real. And it's not an easy lesson to learn no matter how you look at it.
Right now I'm feeling better and am taking this time to really reassess my life and those in it. I am realizing that all the people in my life play different roles. Sometimes it's ok for me to have a friend that just knows how to make me laugh, another that's there to listen, another that just needs me to listen...and then those REAL REAL friends who are just there for you no matter what and make you want to be a better person too. I have also been realizing that there are some people in my life who really don't add to my life. This is a tough realization too. But right now I feel that I have to look out for me...and that may mean weeding some people out of my life for the time being.
I am blessed with several wonderful people in my life...and I have chosen to focus on myself and them now. I am always open to new wonderful people too...and found that when I weeded out the bad...I must have made space for these people because suddenly I am finding them where I least expect it.
Sorry...this got much longer than I expected, lol, I guess it just really struck a chord with me right now.
I hope you find your own way to deal with others in your life.
N

[Melody2]

HI Lauralee,

I know exactly how you feel and even posted a similar post awhile ago. There is no way to really make friends understand, and I'm just like you in I don't talk about my health too much because it can just come across as complaining. The part I struggle with is knowing some of my friends are thinking they could handle this better than me because they only see me when I'm healthy and likely think I'm blowing my health up out of proportion. If only they knew. All you can do is keep your head up and know you are true to yourself. At some point I realized I had to just ignore some of the insensitivities or I could wind up feeling quite alone and bitter...as long as they aren't being malicious I just let some of their ignorance slide (this is after having tried to educate them-sometimes people will just think what they're going to think). You definitely do discover who your true friends are though, the ones who are there for you and who don't question you but accept you and believe you. But don't write a friend off entirely because they just don't understand entirely. Maybe in time they will come to understand better. I have a friend who I have chosen to keep up with despite her obvious lack of understanding what lupus is...but because on the whole she's actually a pretty good friend. Sure, it's annoying when she makes some comments that suggest she can tolerate pain better than me or I'm just not as motivated etc...it does make me super angry sometimes, but if it's just occasional comments I choose to let them slide. I have tried to educate her, it just doesn't work. You'll know the friends who are toxic for you and who are ok to keep. Sometimes it's helpful to find at least one friend who also struggles with an autoimmune disease. I have a friend with MS and it is so easy to talk to each other and share or frustrations about other people not understanding. As long as you have a safe place where you feel you can vent once in awhile, it helps you deal with all the other stuff and misunderstanding.

Take care,
Melody :luck:

[chantal]

hey Lauralee, i know just how u feel. even thou we know our friends love us, when we dont go out all the time, or go home early i think they sometimes take it personally and dont really understand how we feel. im the same way some of my friends i talk to about my sickness and they understand, but u dont want to talk about it all the time and sound like a big complainer. We look fine on the outside well apart from rashes and hair loss and weight gain :P but still overall usually we dont look ?sick? hopefully our true friends are understanding :)

[LWL2002]

:wave: Hi there Lauralee.......It is very upsetting when friends dont understand how we feel! I love that name.........! :) .........Laura

[Hatty]

Dear Lauralee,

Poor you, I do know how you feel. I do also, however, want to stick up for your friends a bit: I talked to a very old friend of mine recently about how she reacted to my illness, and she said that a lot of the 'But you look fine!' and 'You look so much better!' (which I agree is quite breathtakingly annoying) is actually more that they are so concerned, and feel helpless, and don't want to admit the severity of the problem to themselves. I know that when my husband is ill my happiness is so bound up in him I can't bear him to be ill, so it is tempting to jolly him along and pretend everything is fine - and this may be what your friends are doing. Please don't write them off as not loving you: it may be that they love you too much to be able to cope with seeing you in pain, and want to deny to themselves the extent of the problem. In terms of lifestyle, it has been very difficult for my friends to accept that within the space of five years I went from being the person who needed no sleep and was always up for adventures at 5 in the morning to being someone who had to be in bed by 10 and have a nap in the afternoon. But they do get there in the end, if you let them close enough to understand.

Good luck, and I am so glad your man and your parents understand: I have read messages from people whose husbands don't sympathise and my heart really goes out to them especially.

love

Hatty

[RAD1]

Hi!
I just wanted to say that yes, you do find out who your true friends are and they are precious too. As well, sometimes you find out who your real family members are. True, they have no way of knowing how it actualy feels, which is understandable, but they don't bother to research Lupus to have any idea either.
I have learned a hard lesson just because I didn't want to accept the truth about them. After a few years you kinda get the picture ya know?
For me, I am so much better away from that kind of stress, who needs added burdens of snide remarks and "why can't you ?" when they know already and just don't care?

:flowers:
Ruth