[manni]

Somehow I always end up crying in the car. I know people mean well, but sometimes the advice they try and give hurts. In the last two days i have had both my boyfriend and friend tell me that i just dont try hard enough to get better. That I dont care enough about myself and i just dont want to get better. Just get more sleep, eat healthier and youll be better, they say. Its one of the moments that i just sit there and wait til i get to my car to cry. I get up every day and try to live my life as if nothing was wrong. Obviously they dont understand what it is like to be in pain and feel like **** most days. I swear i am a nervous breakdown waiting to happen and the people who should be there to help just aren't.

 

[LoopyLoo]

(((((((Manni)))))))

I know how hard it can be, there is a song that Elvis sang that strikes a chord with me:

If I could be you, if you could be me
For just one hour, if we could find a way
To get inside each other's mind
If you could see you through my eyes
Instead your own ego I believe you'd be
I believe you'd be surprised to see
That you've been blind

Walk a mile in my shoes
just walk a mile in my shoes
Before you abuse, criticize and accuse
Then walk a mile in my shoes

Now if we spend the day
Throwin' stones at one another
'Cause I don't think, 'cause I don't think
Or wear my hair the same way you do
Well, I may be common people
But I'm your brother
And when you strike out
You're tryin' to hurt me
It's hurtin' you, Lord how mercy

Walk a mile in my shoes
just walk a mile in my shoes
Before you abuse, criticize and accuse
Then walk a mile in my shoes

Now there are people on reservations
And out in the ghetto
And brother there, but, for the grace of God
Go you and I,
If I only had wings of a little angel
Don't you know, I'd fly
To the top of a mountain
And then I'd cry, cry, cry

Walk a mile in my shoes
just walk a mile in my shoes
Before you abuse, criticize and accuse
Then walk a mile in my shoes.

It is so hard for others to understand how we feel and it's equally hard for us to explain. So many of us are told that just getting some sun or exercise will make us better.....DOH!

There is a lot of great info on this site about dealing with family and friends. Could you print it and show it to them. I know I did that when I was diagnosed and it did seem to help.

This site is always a good place to vent and know that others will understand.

I'm thinking of you.

Hugz,

Pam xxx

 

[Maia]

Wow, that is really sad. No wonder you wind up crying in your car when you get a chance to "break down" and vent out your emotions a little bit. Their comments only show how little they understand. I would probably say "I'm sorry you feel that way." And leave. And cry a little too.

You lose so much with lupus - the entire life you used to have. No energy to do a full days work. Pain that prevents you from doing things you used to enjoy to do... kidney problems for many people... memory issues... the list can go on and on.

Next time they get the flu - the full blown flu that knocks you down for 5 days minimum kind of flu - I'd be sorely tempted to say... just eat a little better, rest a little more, and want to get better and you should be better tomorrow.

 

[lazylegs]

Hi Manni,

Maybe your boyfriend should go to your next appointment. Hearing about Lupus from the doctor might help him understand. Yes we need to do those things, but they will not magically make everything go away.

Take care,
Lazylegs

 

[peonyprincess]

Manni,

I agree, maybe you should take them to your next appointment or bring them to this site and have them read up on Lupus. If you have a support group, take them there or have them purchase a book on Lupus. I do not believe that they are meaning to hurt your feelings, I just think that they don't understand. I am sure that they love and care about you and would be terribly upset if they knew they hurt your feelings.

As for crying in your car, there is nothing wrong with that. We all need to be able to break down. We deal with such strong emotions with our disease and then everyday life, it can be a bit overwhelming for anyone. It might be a good idea to share some of the things that are bothering you, etc though to your friends and your boyfriend. Maybe they can help you out by just talking to them. I wish you the best and remember to hold your head up. you are not crazy, you are normal.

 

[Raglet]

that's not advice you are getting, that is criticism. You don't have to justify yourself to people like that. The only person who can answer whether or not you are 'trying hard enough', whatever that means, is yourself.

honestly, I would just be very straight with these people, and tell them that you are feeling judged, or whatever else you are feeling. Time to develop some assertive skills and learn how to deflect this sort of rubbish.

Personally I wouldn't waste any time trying to educate them, especially as it then becomes very easy to buy into that whole trying to prove that you are sick number, which in my experience is a ticket to nowhere.

best of luck with it all

hth

raglet

 

[melanie ann]

(((((((manni))))))))
i understand how you feel.... i was having such a bad day yesturday, weepy and in pain,feeling pretty bad.... and my so supportive husband(not) said.(his words) TAKE A PILL AND PULL YOURSELF TOGETHER......i can't write down what i thought or said...comments like that don't help.
like others have said before me...maybe you should take him to your next appointment, plonk him on this site and make him read all the posts, or better still do what i did... tell him to stuff off.
sometimes it's so hard to get people to understand, maybe it's because they just can't take it in because THEY are scared, or THEY just can't see what is wrong with you,pain is only visable to the one feeling it...
i hope you end up getting the support from the people you love, and love you...
big hugs to you........by the way the car seems to be a great place to cry,do it all the time

:grhug:

all the best manni

 

[Joandublin]

(((((((Manni)))))))

What a horrible thing to be told It must be particularly hard to take when its from your boyfriend and friend - presumably two people who are very important in your life.

Im at a loss as to what to say. I know what I want to say though but its not printable

Maybe they were having a bad day. Maybe they are two uncaring idiots. I dont know. Only you can know if there is more underlying what they said. I definitely wouldnt want to go through my life having two people like that around me. It would undermine my self esteem something shocking and would keep eating away at me. Its hard to 'come back' from hearing something like that. Even if your boyfriend was to take the initiative today and realise what he had done and apologise and grovel for his lack of understanding, etc...its still something I would find hard to 'recover' from.

Pam mentioned the info in the Family and Friends forum. There are some posts which are 'pinned' at the top of the Forum which were written to try and help people who dont have Lupus understand the difficulties this disease brings with it. I dont know if its worth printing them out and distributing them. It might not be. As Raglet says, it might feel like you are trying to justify your illness. Only you can decide that though and only you can decide in the longer term if its right for you to have these people in your life.

Its a tough one Manni and I wouldnt under estimate the hurt that has been caused by their remarks. :hugbetter:

Much love to you
Joan:rose:

 

[Sage Hen]

Manni,

I am sorry, your friend and boyfriend hurt your feelings. I felt like crying..just reading your post. I have had the same or similar remarks made to me by a few "friends". I guess, reading your post..hit close to home with me.

I guess, we need to care less, what other people think of us and our illness. If you are like me..a born people pleaser, it is hard. We have to retrain ourselves to put US first. We have to care more about ourselves, than needing others approval.

If you tell the people in your life that you would like support from, that those remarks only hurt you, and they continue to show no support, then it is time to limit your time with them, and find other friends, that will be caring and supportive.

I have had to do this in my life with people. My in laws, friends, I had to ditch, in order to help my own physical and mental well being. I know it hurts Manni..I am so sorry, you are going through this. Chances are.. we will meet a few more donut holes, in our lives before we pass on..

You have all of us on this site to support you, and to encourage you, anytime. I hope this post and the others have helped you Manni. Take care of you.

Love,
Sandy

 

[mysharonna]

Hi Manni,

When I was newly diagnosed I cant tell you how many times I was told...maybe if you lost some weight....you need to exercise more.....you should take vitamins....maybe you should get more sleep....and the ALL TIME best....(from a doctor) maybe you should just get pregnant, you'll be so busy you wont have time to feel sick! (that ones my favorite lol)

Yes, it hurts terribly especially when it comes from loved ones. My husband (boyfriend at the time) really didnt understand until I plopped him in front of the computer and let him sit with this site for an hour or so.

Turns out, alot of his comments were just from him feeling helpless and scared, and some from just being...er for lack of a better word..DUMB

Taking him to my doctors apointments helped him better understand things too.

good luck!
Sharon

 

[neongirl]

Sometimes people can be so insensitive . I had someone tell me if I just would get some excercise and build up some strength I would be well again.....the person who said this was in terrible health himself due to choices he had made......what the remark was really meaning I feel, is : Don't inconvienience me with your trouble, I don't want to be put out or bothered by trying to deal with this and the fact that it may interfere with what I want at some point in time...........If you feel the remarks made to you were from a similar place, you may want to re-think your relationships, chances are the relationships are pretty lop-sided with you giving far more than you are recieving. I'm sorry you were hurt in this way ((((((((hugs)))))))), and the car really is a good place to let go occassionally......as long as it's not moving:hehe:

 

[karen.w.]

((((manni))))

I am sorry you are feeling hurt & upset at the moment :sad:
I understand some people have difficulty understanding this illness but we shouldn't allow it to be an excuse to hurt our feelings...personally it doesn't sound to me like their ignorance is out of fear it seems more like criticism (as raglet said)

you don't deserve to be treated this way by people you love,if you could I would be open & honest with them & explain how insensitive they are being & that you need support & understanding not criticism.

like sandy, I am a bit of a people pleaser but to be honest over the last year I have begun to ignore people who don't understand...I don't have to justify my illness & the reasons I dont work etc to anyone...I am lucky most of my family & friends are very understanding but life isn't perfect so yes I do know a few insensitive people in my life who have hurt me through comments etc but now I am determined not too let them affect me,its not worth it,my well being is more important.

good luck manni & take care
remember you have us too :wink2:
:grhug: karen x

 

[Primrose1960]

Selfish and insensitive people

Sorry to hear about the trouble given by some peoples "nearest and dearest".

Maybe it should be a classified disability being born without the side of your brain that controls your mouth when you say the wrong thing, cant show sensitivity to people who are in pain and only really think about yourself all the time.
I actually feel sorry for them, I would hate to be so thoughtless and hurtfull to anyone ever!!

Some day it will come back and bite them on the ass, what goes around comes around, just see how well they will cope if something goes wrong with their health.

They are sad.

I personally try and avoid toxic people at all costs, bad for my health.

And I also find that the car and shower are my crying places too!!! The only place where I can be alone and vent, crying is good for us, gets rid of the toxins in our bodies!!

 

[manni]

At least they both admitted to being words i wont say today.

Today was a much better day.
While i had to tell my boyfriend a billion times that he was a *** before it clicked i his head, it was good to tell him and get it out of my head. I hate feeling bad and being stressed on top of it. Looks like im going to be getting a really good massage out of this
And my friend said," i realize i really haven't been a good friend lately and that sometimes i take you for granted."
Thanks everyone for all your hugs. It always helps to know when people know what we are going through.

 

[acard]

Manni,:there:
It is a hard to deal with a chronic illness and I believe for us it is even more difficult because of the daily pain, brain fog and more and more symptoms to throw on our fire. I really think our friends and family do not have a clue to how much we suffer. I am not saying they don't try, but I am saying no one knows until they live it. Even when we are in remission we almost forget how awful our quality was. Then we flare and we are thinking-Oh yes I did forget the pain that is there 24/7.

I guess I am saying is just keep communicating to your family and friends.
You know where to come to vent because most of us have been there done that. I know I have and I still do.:hehe:



Hugs,
Becca

 

[Joandublin]

Well done Manni on confronting it head on

Im glad things are better as a result. Enjoy that massage and while the going is good......something small and gold wouldnt go amiss either :wink2: :hehe:

Best of luck!

Cheers
Joan:rose: