If you could tell non-Lupus sufferers one thing... [Archive]

ruta74

12-06-2004, 03:11 PM

Hi! :wave:

I can so much relate to what you are writing here!
It is so d*#n hard to explain anyone that what my illness actually means.
If there were only one thing I could tell them it would be - "I am not faking it"

And I must say the same as Connie just said that I have found so much understanding since I found you guys here.
Until I was the girl with the utopic disease (which she probably made up by herself)

It was like "Daah everyone is tired, howcome you are more tired than the others!?"

Lets keep up the good spirit and having the problem we have we can then probably find more tolerance and understanding towards people with other big problems.

Lets be strong ourselves and find strengt to supoort the others.

Take care!

Ruta :flowers:

Starlady

12-06-2004, 05:37 PM

Hi,

I would just like to add the following:

1. When I say I am tired, it doesn't mean I am just tired, it means I AM EXHAUSTED AND CAN BARELY LIFT A FINGER!!!

2. When I am depressed, IT IS NOT SAME AS BEING FED UP!!!!

That's me then!!

Cheers.........Starlady x :cry:

here

12-06-2004, 05:54 PM

;) Hmm this is a good question.

I think if I could tell someone w/o lupus who was trying to understand how I feel to not. Don't try to understand me, because you can't would be my honest response.

I am more than a simple phrase or line and there is so many complex things that I am going through that unless you are God himself, there is no way you can ever begin to know what I have, am or will experience.

Just help me with a load of laundry, offer to watch my daughter when I am having a bad day, refrain from telling me how you think I feel, give me a kind smile or say nothing.

That is the best way you can understand, by simply saying it is o.k. not to understand. I accept you are sick and am just here for you when you need me the same way you be there for me.

That is what I would tell them!

Jamie :flowers:

Melody2

12-06-2004, 07:36 PM

I would say to please stop asking me to do more and accomplish more. I'm trying my best to get as much done as I can. It only makes me feel like I'm not good enough when you tell me how frustrated you are that I haven't done this or it would be good because I'm doing that. I am happy to hear about all the other things people my age are doing or accomplishing, but only if it's not said in the context of 'why aren't you?'

bananawear

12-07-2004, 12:49 AM

One thing that comes to mind in reading all the posts is that I would ask others to stop making me prove all the time that I am ill. I feel often times like outsiders want proof that you cant really do things or go places, or that you have to give examples of why you are not able to do the things you use to do. Don't make me contstantly have to defend myself as this takes up precious spoon energy that I don't always have extra to spare.

I have tried to become more selective about keeping the people in my life who are compassionate and understanding of what I am going through and while that process has been hard, I think that in the long run it makes your life much easier. Some of the people, like family members, we can't eliminate completely ;) but we can choose to limit our expsoure.

Take good care- Chris

here

12-07-2004, 03:14 AM

Amen to that Chris!

songbird

12-07-2004, 04:17 AM

Just wanted to add a bright note to this thread.

My older sister is coming to Louisiana to visit over Christmas, and I'm going back to Texas with her to visit her for about 2 weeks now that I am no longer working. She has a good friend with fibromyalgia, and so knows all about spoons. In fact, it was my sister who first emailed me the story about spoons. Then I saw it on this site also.

Sis wants very much for me to babysit her 2 kids (1 and 3 year olds) while I am with her so that she and her my brother-in-law can get some rare and much-needed alone time. I am more than willing to help. But she said to me this morning, "Maybe you can help me just by watching the kids while I'm doing laundry. Maybe leaving them alone with you is not a good thing. We have to consider whether or not you can lift the kids." (Diaper changing, etc)

She is also looking forward to taking me to the Fort Worth Zoo (where she has assured me they have motorized scooters--I'm a whiz with those.) I can't wait to see a zoo again, everyone has been so sun-phobic since my dx!

Thank heaven some normals do understand.

Steffanee

12-07-2004, 09:24 PM

Great thread!!! :D

Things I would say to normals (doc included!) :thumbs:

1. Please learn about this disease.

2. Please believe me when I say I dont feel well. I am not faking.

3. Please dont tell me you know someone with this disease and they are doing fine. It makes me feel defeated.

4. Please stay in contact with me. It is lonely not working and not feeling well.

5. Please, please, please understand me.

I think there is more, but this is a good start!! :)

Happy holidays!!! :santa: Steffanee

specialk16

12-07-2004, 10:29 PM

I would just say, please don't disregard my illness,,, I have had positive blood work and tests and even though I don't have a positive dx yet, doesn't mean that everything is okay inside of MY body.

I would also say, don't try to compare your aches and pains with mine, if something is wrong with you then go and check it out with your doctor like I did. If you can't accept what is wrong with me, then I can't exept what is wrong with you...

I probably sound bitter, but I am po'd with a lot of people right now....

Merry Christmas,
To all of my Lupie friends... :santa:

Torrancegirl61

12-09-2004, 07:56 AM

WELL SAID Steffanee :thumbs:

Connie :hello:

AnM

12-19-2004, 04:24 AM

Some people have said some great stuff I would like to say.
I'd like to tell some people that u may see me sitting on the couch, you may see that i am not doing as much as I was...but that does NOT MAKE ME LAZY!!!! :tantrum: Sorry that was pisses me off! People always have something to say if you're not doing as much as them. I haven't been working for the past yr. n some people have actually thought or said I was lazy- (just not to my face) they should be thankful for that :lol:
I'd like u to try living with this for 1 day! u wouldn't even make it past an hour!
What really bothers me is when people complain in front of me.
The other month my husband n I went out with my sister n her husband n she had been painting their house- so her back hurt n something. But the whole time we were out I kept hearing her complain. It bothered me so much. B/c u can say u don't feel well, u can say what's wrong, BUT to go on all day over n over throughout the day that's way too much. I told my husband it pissed me off b/c there she is complaining about her back- n I said to him then she shouldn't paint! At leeast she can prevent the pain!!!
I've realized that healthy people complain WAY TOO MUCH!!! about just anything.
I don't complain to my family n friends- I'll say I don't feel well, I'm tired, or I'll say what's hurting, but that's it- n that's once in a while. But, when I have mentioned about not feeling well to my sister- now I've nearned not to say Anything- she really hurts me. All I've said was I'm in a bad mood b/c I don't feel well- that's it!! n she starts going on about u don't take care of yourself, you should do this n that n shouldn't do this or that. :tantrum: she doesn't know how it is. If u don't know, if u haven't gone through it then U can't say anything like I'm just an anybody- this is more than what u think it is, or would ever know. (Actually I just emailed her the "Letter to Normals" the other day- it was perfect for her to read n realize it's not just me with a lot of things) Sorry a little built up!
*another thing I would say is- the pain I feel is not the same pain u feel if you don't feel well! If I was to mention my body aches- my back hurts or whatever, don't think u know how it feels b/c u've had a stiff back- NOT the same thing.
Plus, when u feel pain it's not the same b/c my tolerance is high, so it must be really bad- a LOT of pain- for it to be affecting me like this!

Ok- this was a good topic to start I'm sure many would have lots to say about it. As I can't even shut up. :lol:
Actually, there are some things I have said to people in certain circumstances, but like they understand ;)
AnM Hope u enjoyed this long post. :D

Torrancegirl61

12-19-2004, 08:34 AM

Boy AnM, :o I can so relate to what your saying..........I too feel the same way :hissy: If only others would just spend a day with having Lupus,then maybe then they would see what it's like to be us. After all we didn't ask for this... :cry: and they act like we did, and that were lazy to top it off! I am so tired of others judging us for not being able to do things that,we once were able to. I know I would give anything to have my old self back, just like everyone else here would. But the way others treat us,just makes me sick :tantrum:

Well I just had to agree with with what you had to say, as you are so right...... :thumbs:

Connie :hello:

AnM

12-19-2004, 10:33 AM

Thank u soo much. It is great to have people that actually understand me n what I am talking about.
I just have to say- w/ all my posts it's been so helful.
N Thank G-d for this site, n all Support systems!!! :jump:
AnM :thumbs:

songbird

12-19-2004, 12:38 PM

One more thing I would say--I guess it is just a slight reiteration of things others have said here.

Never assume anything.

When I first got on Prednisone I actually had people (usually complete strangers!!) walk up to me and ask either, "Are you pregnant?" or worse, "When are you due?"

It hurt so much because motherhood was a great dream of mine I can only now achieve through adoption--and I was self-conscious about the added weight before, folks, don't rub it in!

I wanted to say sometthing like, "No, I'm not pregnant, and I can never be. Thanks for rubbing salt in the wound."

But all I said was, "No." Sometimes I explained about the Prednisone, others not.

Normals sometimes!

jelly

12-26-2004, 05:13 PM

i think i would want people to understand at work that when i say i don't feel good i mean i really dont feel good. that i'm not just complaining or trying to get out of work. that my knees really hurt and that my joints always hurt. i think i want people to get that i look fine but i'm not.

Raglet

12-27-2004, 01:30 AM

I may have a different take on this, but what I tell other people most of all is that there are worst things in life than lupus.

this helps me keep things in perspective, and to be honest I don't much care about what others do or don't think about my illness, I have long since given up worrying about that. I must say I enjoy the extra space in my life that used to be occupied by my desire for others to know what it is like to me, now I am just proud of how I keep trucking along.

but i do think this is very individual, what is right for me is not necessarily right for others

raglet

Torrancegirl61

12-28-2004, 08:17 AM

AnM I am so glad that your able to get comfort here :hugbetter: , and that's what this site is all about :highfive: I just joined it a few months or so and love coming here and meeting others like yourself. :thumbs:

I hope to meet you in the chat room one of these days/nights...

Take care & God Bless :flowers:

Connie :hello:

Vanilla65

12-28-2004, 07:17 PM

Dear AnM,

So can relate to what you said, "tolerance is high, so it must be really bad - a Lot of pain - for it to be affecting me like this!"

Because of the high tolerance for pain, I have a tendency of trying to do more than I actually should, then people expect me to be able to keep doing as much all the time. It makes me feel sooooooooooo bad when I'm not able to. And I suffer for it in the long run, but want to try and make everyone happy. I also feel as though I am trying to make myself happy again by trying to do things I was once able to do. It's a short lived happiness though.

Just a warning to everyone with "high tolerance to pain", it can get you in trouble when you file for disability, because those people don't understand it. They are the same as other people, if you are able to do something one time with out having problems, then you should be able to keep doing it.

Like I posted earlier on here, to bad the docs and everyone else are not able to tried places with us (during a flare) for at least one day to see what our bodies are really going through.

Vanilla65

northstandgirlie

01-24-2005, 02:00 PM

:goodvibes: I'd just like to say........

YOU GUYS ARE FANTASTIC!!!!!

Reading the posts in reply to an excellent question, I'd like to say this:

1) Just because you haven't heard of it doesn't mean to say it isn't serious

2) Just because I have Sjogrens not lupus does not make it any less debilitating or painful to ME

3) Just because I put a brave face on things, don't take it at face value that I'm having a good day.

Oops, that's 3 not 1. :rolleyes:

Keep 'em coming!
Rita

barefut

01-24-2005, 06:08 PM

I would ask a non lupie to think back to when they had the worst flu ever, and then try to imagine living every day of their life like that..................

1. going to work like that
2. taking care of the kids like that
3. taking care of the house like that
4. going to school like that

and maybe not getting any help or support from anyone, so they had to do everything alone, and then try and deal with the depression and feelings of hopelessness that follow, oh and also the grief for the way your life used to be.

Yep, that's what I would say to a non lupie to elicit some empathy, and I HAVE said that to my husband.

He's been not too bad lately, with helping and such, (must want "some" ;) :lol: ) but the other day he did say, "What's wrong with you today?" :angry:

Good topic! :thumbs:

here

01-25-2005, 04:31 AM

Barefoot,

Exactly!

You said it!

LameWolf

01-25-2005, 09:44 AM

I've recently taken quite a bit of flak for having to cancel social engagements at short notice, also for refusing to do a "whole day" event because I knew I wouldn't have sufficient energy.

I'd like to tell the people concerned that I'd like to change places with them, just for a week, so that they could personally experience just how painful and tiring it is for me to function. Perhaps then they wouldn't be quite so judgemental when I can't join in with everything.

Honestly, its bad enough having to miss out on things I'd like to take part in, without having people get on my case for it!

I'd also like to be able to tell them that their unkind comments cause me a lot of stress, and in my case, stress is the major thing that is guaranteed to bring on a flare.

Sorry if I sound a bit bitter, I'm somewhat p***ed off with some folks right now!

northstandgirlie

01-27-2005, 10:20 AM

;) Hi guys,

Had a bad night with my SS last night. Listening to the radio this morning I had to smile. The perfect song to sing to non-sufferers!

Wouldn't It Be Good - Nik Kershaw

I got it bad
You don't know how bad I got it
You got it easy
You don't know when you got it good
It's getting harder
Just keeping life and soul together
I'm sick of fighting
Even though I know I should
The cold is biting
Through each and every nerve and fibre :cold:
My broken spirit is frozen to the core
Don't wanna be here no more

Wouldn't it be good to be in your shoes
Even if it was for just one day
And wouldn't it be good if we could wish ourselves away
Wouldn't it be good to be on your side
The grass is always greener over there
Wouldn't it be good if we cold live without a care

You must be joking
You don't know a thing about it
You've got no problem
I'd stay right there if it were you
I got it harder
You couldn't dream how hard it got it
Stay out of my shoes
If you know what's good for you
The heat is stifling
Burning me up from the inside
The sweat is coming through each and every pore
Don't wanna be here no more :hugbetter:

Wouldn't it be good to be in your shoes
Even if it was just for one day
And wouldn't it be good if we could wish ourselves away
Wouldn't it be good to be on your side
The grass is always greener over there
And wouldn't it be good if we could live without a care

:love: Take care everyone!
Rita

chant224

01-27-2005, 02:47 PM

I think the biggest thing that I would like to say is like most others here. When I say I am tired after doing six loads of laundry, the dishes, the floors, and the bathroom and the only thing that comes out the other mouth is why didn't you clean the shower with bleach, that really makes me frustrated. :hissy: I mean I live on the third floor and the washer and dryer are in the basement that alone makes me tired. :cry:

So after venting about this I think I would say please just try to understand that when I say I'm tired its not tired like "not enough sleep" its like my whole body aches and I could lay down and never want to get up again tired.

That feels better thanks for this post..... :highfive:

Chantelle

AnM

01-29-2005, 02:56 AM

Rita,

That's a great song. I never heard of it before. Thanx for posting that. It really does explain some.
What is it really about? what's the singer or writer talking about? depression, it sorta sounded like, but also something else?

Take care,
Alicia :coffee: :flowers:

AnM

01-29-2005, 02:57 AM

artist

01-29-2005, 04:33 AM

I get sick of healthy peoples' feeble, little excuses. They make a big deal out of nothing. I try to get out and play golf. It is good for me mentally to get out and take my mind off of my problems in the fresh air. I am frequently playing on vicodin with bad everything from head to toe, but that doesn't stop me from trying and my body usually pays the price for it later . When other people make excuses for why they can't play; such as "my thumb is crooked" or "my finger is kinda sore", It p**ses me off. If they only knew what I have to deal with. I would love to have only a crooked thumb!
Kristi :jump:

here

01-31-2005, 06:22 AM

You know I just don't know what to say any more.

It seems like nothing is right; you know?

I really do feel alone in all this and have so many deep feelings that I just can't let surfae or don't feel comfortable sharing. I mean I have a little girl who depends on her mom, and crazy as it may sound many of my feelings just seem so bizzare or unstable that I don't know how to deal with them.

Doctors don't understand most of the time; family just wants to reassure by saying "you look fine" or you must be better. Friends have no clue. And, I think many think you are just faking or it is in your head. It is quite a dilema. The hardest part is it won't ever go away. I know my lupus is a life time maintance that I have to deal with. I wish that I could tell them something, but it doesn't seem to matter what you tell them. You just get that blank look. The "you are causing your own problems look." That hurts the worse and the pain they cause is worse than any physicall pain that the disease puts on you. And, well, if you have severe lupus and have dealt with it or any amount of time, you can really understand how devasting and hurtful someone
complacy or lack of empathy/understanding can be for me by that statement.

So what do I say? Little as possible I guess, and pray for guidance.

Jamie

Wendy Rene'

02-22-2005, 06:43 AM

I agree with you guys but here is one that really gets to me and that I would love to shout at non lupus patients or non ill people>>>>>I DON"T WANT TO FEEL LIKE YOU THINK I AM A FAKE WHEN I FINALLY DO FEEL LIKE LAUGHING OR SMILING AT A JOKE AND THEN A FEW MINUTES OR HOURS LATER CRY BECAUSE I AM IN PAIN OR I GET SO WEAK I HAVE TO LAY DOWN OR I NEED HELP GETTING UP OR I FEEL SICK AND HAVE TO VOMIT.PLEASE LET US LAUGH/SMILE WHEN WE CAN AND NOT JUDGE US AND SAY I JUST SAW HER/HIM AND THEY SEEMED FINE TO ME.THEY WERE LAUGHING AND HAVING A GOOD TIME. I DON'T UNDERSTAND HOW THEY CAN GO FROM ONE EXTREME TO ANOTHER :angry: That is what I would say!!!ALong with many other things. PLEASE DON't TAKE OUR FEW MINUTES OF LAUGHTER AND SMILES AWAY WITH DOUBT THAT WE ARE REALLY ILL>>BELIEVE ME WE WANT TO BE WELLLL!!!!!

Ms.MaryAnn

02-23-2005, 02:40 AM

WOW, I am finally not alone reading all the above replies. I too would like to add that the first thing I would like to say is:
DO not measure my illness and my suffering by the way I look. Sure I look great, but inside my body is in turmoil and in constant pain.
If only our family, friends and co-workers could experience what we are feeling for even an hour. They would then understand.
Thanks for letting me join this wonderful web site. I finally feel I have friends that understand. I could cry for I have been looking for a support group and now I have found it.
GOD BLESS YOU ALL. :love: :shrug: :D

weedhopper

02-23-2005, 04:23 AM

I love here's discription of the fatigue. Its so true. In trying to make some people understand, (or at least lay off ;) ) I've also pointed out its like living with that bad case of the flu. I've even gone as far as to say on other days its worse, like the flu with a hangover thrown in. :sick: While not everyone gets that one :rolleyes: Its been a long time since I drank,(13 yrs.) but I can remember some days after being out drinking and up all night where the hangover that followed wasn't as bad I sometimes feel now!!

missBliss

02-27-2005, 06:41 AM

This thread is great!! (for the comforting of lupus etc)
Everyone mentioning feelings & thoughts that we've all shared!! I can relate to just about ALL of them posted & there is definatley something comforting about that... it means youre not alone!
I know where 2 refer close ppl to when they dont "get me!!" or my life!

u guys rock!! I take my :hello: off to u all!

xo

busylizzie

03-04-2005, 12:27 PM

My manager just phoned - 'you sound more positive today' she said - why did I feel the need to justify it? I know I'm not well enough to work but I feel guilty for feeling positive! Felt the need to explain that I may feel positive this morning but I could be crying by this afternoon - a sure way to change my mood!

The thing that's really sending me round the bend is everyone telling me that when I go to my flat in Cyprus B) (I've typed that 3 times - brain fog today!), the sun will do me good and I'll feel better when I get back because being away will take my mind off everything - in other words, it's all in my head and once I stop thinking about it, it'll go away. :cry: How many times have I told them that the sun may well be my enemy - unless I'm one of the very lucky ones? :doh:

As there are so many of us Lupies, how come nobody out there knows anything about it?! Thank goodness we've got each other to scream at and laugh with on this brilliant site. :D

Greekgoddess

03-07-2005, 01:04 AM

:flowers: Hi everyone,
This is a great topic because it allow us all a time to vent out our feelings. I would tell people that just because I look healthy doesn't mean I'm not sick. :sick: Also that don't get mad at me when I say I can't plan anything because I don't know how I'll be feeling. Don't tell me I need to exercise more when my muscles hurt. Don't think I'm faking it when I start my day feeling good and later in the day I'm in a flare. Don't think I'm crazy when I can't remember things and have trouble talking and remembering peoples names. Also don't call me rudolph when my nose gets red :angry: because I have a rash on my face.
Thanks for letting me vent. Hugs,
Diane

RAD1

03-07-2005, 03:54 AM

Well, trying to explain to people who don't have Lupus is like trying to explain what it's like to have a baby to someone who hasn't had one. They can never really know or understand. We can try to explain by relateing how we're feeling and perhaps they can empathize with us. I would like to have acknowledgement for how I'm feeling and I stand up for myself more because I need this in order to cope better with life. If you don't understand me or care enough to respect my phisical well being then stay the !2## away from me. If you come to see me you can come anytime, if you come to see my house, make an appointment! And remember I love you! ;) :halo:
Ruth

jasmine777

03-07-2005, 11:11 PM

I would like to say:

1. Please do not tell me about your cousin who "cured" her lupus by juicing a carrot and an apple everyday.

2. Do not tell me I need to exercise more and change my diet or I just may shoot you if a gun is handy.

I could write a book to my group of current coworkers--not all of them, just a chosen three, that I have meanly nicknamed, privately and only to myself, the "Chubby Checkers." They are chronic complainers, and I may have lupus, but I can still outwork any one of them, because they are lazy,gossipy, and mean. Two of them left me a stack of work to do on my shift that they easily could have done on their own shift. I have learned to tell them as little as possible about myself, because they are simply not nice.

3. To my dad--Do not tell me it is all from stress because my oldest son has moved back to town.

katrina

04-03-2005, 07:04 AM

This is such a good topic..and everything that everyones said about what they want to tell people with non lupus is so true. This disease is so complex and hardly anyone knows what it is unless they're going through it.

If i could tell people without Lupus what i would want them to know about..is probably to stop comparing my disease to like every other disease out there. I know it could be worse than what it is...but u don't understand everything i go through so don't tell me how good my life is when most of the time its a living H**L!

Sine i'm only 16 alot of my friends are really immature and i would like to tell them that they're silly little concerns like a guy not liking u or being grounded is NOT the end of the world! and that NO i do not want to go out and party and maybe end up in a flare or worse DEAD! and if u actually cared about me u wouldnt even ask me that!

I wish u could understand that just because i dont go out very often anymore doesnt mean i DONT want to..its because im physically unable to do so..and i wish u guys would be there for me more often..and call or write an e-mail to show me u care when im going through a hard time..becuase no matter what u guys are going through i always give u my support!

Now if only i could get my friends to come to this site and read all this stuff! Its nice to get it off my chest though - thanks xoxox
Love Katrina

Vida

04-07-2005, 05:45 PM

:wave: hi

what a great "page" there are loads already on here that i would or have said to people although i don't actually have lupus but have been dx with primary billiary cirrohsis and some of the symptoms including the fatigue are the same.

my persoanl list includes the following:-

i may have cirrohsis of the liver but that does not make me an alcoholic :tantrum:

to my mum:
when i get brain fog (which is often) and say the wrong words i don't need you to finish what i am saying for me as if i am 2yrs old and not 46 :hissy:

my sister in law:-
when you, your young son and my mother in law stay with us for a week i can't always be up at the crack of dawn and it's not because i am lazy nor do i do it on purpose to ruin your holiday with us :hissy:

to a friend of mine who has been ill with ME/CFS but is now better:-
when i try and talk to you about my health problems because i think that you if no one else would understand i do not want to be told "but you look so well" :woohoo: you of all people ought to know better.

to my g.p.
when i tell you i am frustrated don't try to prescribe me anti depressants :doh:

and finally:-
when i am feeling tired either a little sit down or a good nights sleep will not make me feel better :woohoo:

i could go on but won't

Bobby

04-09-2005, 12:54 AM

What a great question.

I'm gonna print this thread, copy it several times, pin a copy over my desk at work and send some in a mail out with the address of this site.

What I would say is:

1. When I say I'm tired, I mean I'm KNACKERED. The donkey is dead, it cannot go another mile, please get off my aching back.

2. The rattle you hear is from my many meds, it's not cause for your next joke(sic) about old bones rattling.

3. You look like cr*p too, ....what's your excuse?. :D

I could go on, and on..... Bobby

weedhopper

04-09-2005, 04:57 AM

:highfive: :lol: :highfive: :lol:

Lol Bobby!! That's the funniest thing I've heard in some time!! I'm goina' try to remember that one about the donkey and aching back for the next time I get one of those "tired AGAIN?!" looks from somebody!

Thanks for the laugh!!

Weedy :flowers:

busylizzie

04-10-2005, 01:39 PM

I have just copied some of these comments to email to work so that if and when I return everyone will be aware of how I feel and that it's not just me who feels that way. Hopefully, now no-one will put their great big foot in it and rub me up the wrong way as soon as I get there as I know it will be quite emotional going back after months off. :(

While I was in the middle of doing this, m-in-law phoned and asked if I was better! She then went on to tell me that she knows several people who have Lupus and they're all better now - apparently 'cured' by the steroids! :woohoo: Simple isn't it?! THEN she asked me if I'd read the article in the Daily Mail and if that had made me feel better - speechless!!!!!!!!!!! :hissy: That's one person I'm never going to get through to!

If I had to say one thing now, it would be - PLEASE DON'T TELL ME YOU KNOW SOMEONE WHO HAS LUPUS AND THEY'RE BETTER NOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Thanks for listening guys!

xxxx :flowers: :flowers:

TiggerBoo

04-12-2005, 11:37 PM

I would say:

Specifically to my boyfriend - Do not tell me that if I just think positive it will all just magically disappear. Don't keep telling me to "stop moaning" when we're walking along... Even a few minutes walking can wear me out! Don't you think I would have it any other way if I could? You of all people should be supporting me!

To my Parents - I'm sorry that I can't visit more often because i'm so ill, maybe if you read up on it more, or asked me about lupus you will realise how I feel. Don't make me feel guilty when I have to change my plans at the last minute because of hospital stuff. I am ill. Just because i'm cheerful most of the time doesn't mean I don't feel like cr*p!

To every non lupus patient on the planet - Don't judge me because I look bad, I feel bad too and if I look bad that is why.

And finally...

To my boyfriends Mother - I AM NOT FAKING IT!!!!!!!!!!!!!!!!!!!!!!!!!! :tantrum:
Don't talk about me to my boyfriend like i'm a peice of rubbish! Don't say i'm faking it! You know absolutely NOTHING about lupus!

goats

04-13-2005, 01:48 AM

this may be negative, but I give up trying to make people understand
if they don't understand or try to. to bad
it is my life that I am trying to get some kind of understanding for myself
so I can learn to live with it, I don't have the energy anymore to explain it to people or doctors that don't know about it. let them educate themselves like we have to. no lose on my part if they don't want to visit. or deal with me
like everyone in the world that has some kind of illness we must take care of ourselves and our children first.the rest can wait or get lost
sorry for venting .guess I didn't have a good day
:tantrum:

weedhopper

04-13-2005, 04:52 AM

You do have a point, Goats.

Whatever problems others might have with us or our illnesses, is just that,......Their Problem...Not ours! ;)

Thanks for another perspective! :flowers:

here

04-13-2005, 02:40 PM

I think you have a good point too Carol. Someone once told me people only have an effect on you if you give them that control over your life.

Maybe that is somewhat true. So, why let them effect us? uh?

Hope this finds you having a better day Carol.

here

04-13-2005, 03:23 PM

You know I have one more thought (well probably not just one :lol: ).

I think it would be nice to tell a non-lupus person to think about what they say before they say it and how they will feel if they put theirself in my shoes.

Vida

04-13-2005, 07:45 PM

:flowers: hi goats

well said :highfive:

i often feel the same and i have told people if i have to explain you just would not understand and i am not going to waste my precious energy talking to you.

i think the hardest part of being ill is not letting others get under your skin it only makes you feel worse and as someone has already said don't let uncaring people have any control over your life.

:flowers: :flowers:

Helene

04-14-2005, 12:58 AM

I would like to say.....

I may sound fine when you speak to me on the phone....but you cant see me speaking through clenched teeth, trying to mask my pain, or lying on the floor because thats where I fell and I cant get up ! :cry:

I am not a doctor !. Please dont ask me to diagnose your health problems, Im still trying to figure out my own! :wacko:

If I dont answer the phone/door/email etc, its not because Im being funny with you, its because Im p***ed off, and I dont want to inflict my depression on you.

To my other half.....thanks for being there for me.......but you could try a little harder at times ! :P

To my doctors....pull your fingers out of your a**es ! :tantrum:

To my mum....Its not your fault....its not contagious....its not embarrasing....go to a library....look on the internet....LEARN ABOUT LUPUS....you cant shut the door on this thing and expect it to disappear :angry:

To the horrible man in Tesco's who accused me of being an alcaholic, because I was slurring my words and bumping into things at 10 in the morning...GET A LIFE !

PHEW.....FEEL BETTER FOR THAT !!

tamathapayne

04-14-2005, 11:16 PM

Good Post,

I would say i might not look sick, but seeing is not always believing. There are thousands of everyday stuff that you can't see but it is still there.
:D

joannemc

04-15-2005, 03:35 AM

I have to agree with jamie, I dont want to keep trying to explain it, and if I ask for help with something, that ought to explain how Im feeling at that moment. But I still go on researching and want to help get the message out there about autoimmune diseases, so we all can understand them! Love n Hugs...Joannemc

banja

04-20-2005, 10:38 PM

:o Vanilla65 I agree with you completely.
I have a very high tollerance to pain and am an overachiever also. According to my kids and hubby I am Super Mom.
.....But , now that I am down all I get are accusations. My husband is always telling me it is age. Your just getting older.
I am right in the middle of a flare up, one of the worst one i have had. I am going to my doctor daily for toradol shots to get me by til I can take another steriod round.
I have been informally dx meaning, doc says so but no test are confirming it. So my hubby is in denial weather it is in disbelief that I actually have it or hoping I don't I am uncertain cuz we can't talk.
My sis in law was dx 2004 with lupus after being told for 3 years she had bechets. I have been having my problems since 2001. He, i guess thinks it is weird that we could both have it. My rheummy gave me a dx of fibromyalgia due to insurance reasons. My ins. won't pay for lupus tx without verifiable blood work but they will pay for fibro tx. and they are tx the same in most cases is that strange.... Any way I would like to say to non lupus peps that you shouldn't run you marathon mouth until you walk a day in my shoes...

Thanks for letting me vent it has been a while. I guess I was also hopeful since it has been since late Sept since I've had a flare. But I am now having to face the reality that yes I do have Lupus.

Banja

Lily

04-21-2005, 12:36 AM

Sorry to jump in with an unrelated topic but just wanted to reply to Banja about Fibro and Lupus being treated the same? Nothing could be further from the truth - the treatments are entirely different?

love
Lily

rsmurphy

04-21-2005, 01:17 AM

Boy, did I appreciate reading these suggestions. It is so comforting to have new "friends" :wave: who understand, and echo my feelings, so i know i am not loosing my mind. well, at least not today. Does anyone know if we can order new minds on ebay? My favorite is just because I look ok, doesn't mean I am ok. In fact, I usually feel lousy, and measure good days as not as bad as...... hugs, sue.

sunladyb

05-01-2005, 05:17 AM

Hiya guys :wave:
I would like to say to people

co-workers and boss:-
i'm not pulling a sickie I am not well just because i was laughing and smiling at work doesn't mean I am well again (I wish I was :cry: )
Don't tell me you know someone with Lupus and they cope ok :tantrum: I am coping just in pain.
To my in laws or outlaws -
I am not lazy I am exhausted and if you don't feel welcome when you come on holiday thats because your not because i don't need the added stress :tantrum: :hissy:
To everyone who says well you look ok
- yes I may look ok but i don't feel ok i ache all over my head pounds 5 out of 7 days I feel sick to the point of vomiting :sick: .it hurts to put one foot infront of the other to see my dr somedays :cry:
To my hubbie- Thankyou for caring but please stop asking me if I am ok you know the answer why ask :wacko:

There is more but my fingers ache :D
take care
love Dawn :flowers:
P.S great thread

woody wooden

05-03-2005, 04:28 AM

The one thing I would like people to know is that even though we look normal that doesn't mean that we are not in pain. I would give anything for my family to understand that some days even a hug or a pat on the back hurts so so much. And if they could walk in our shoes for one day I beleive they would get it.

woody wooden :love:

artist

05-03-2005, 06:04 PM

My son hurt my feelings recently when he said "Tracy is so much better than you now ,she can beat you" ( Tracy and I used to golf together,never once did she beat me.)I was always an athlete(5'-10" and strong).
Well, excuse me but I've barely been able to walk or use my hands the last 2 mos.She has the advantage of working out with a personal trainer and many golf lessons.
So quit trying to compare me to other people. How about recognizing and complimenting me on how hard I try with all of the obstacles I'm up against.Do they have to use vicodin to play a round of golf? they would quit if they have a sore finger!

Kristi

Sleaps2much

05-06-2005, 11:17 AM

Great thread,

I hope this doesn't come across as too negative but the thing I've ended up saying is "believe me, even though I don't look sick, I am". If someone doesn't believe me, I will say to them - goodbye, have a nice life and this has included family members.

I just don't have the energy or the will anymore (not because of depression but because of the joint pains, fatigue, brain fog, odd symptoms...) to fight/plead/convince/reassure people.

Then I go to one of my friends who does believe me and I'm not forced to explain or feel bad about my invisible disease - no wasted energy. I've had strokes and PEs and life is too short to try to convince people who are not interested in knowing anyways.

I think that those of us with family members who refuse to believe us are dealing with awful stuff in them that they will have to deal with at a later date and that's not our problem to deal with - we have enough.

Yuck, time to lighten this post up, what I would like to say is in that favorite hockey song...

Na, na, na, na... na, na, na, na... hey, hey... goodbye
na, na, na, na... na, na, na, na... hey, hey... goodbye :wave:

... and hello fellow sickies (and normals) who understand :hehe: :highfive: :flowers:

Sleaps

rwb200

06-02-2005, 07:10 AM

In the end there is no end to the things you could say to others.
If they do not understand then they are not trying to understand.
Denial is easy way out for others who do not have to live with pain all of the time.

I do not have Lupus, I do live with somone who has Lupus.
I see because I make an effort to see, I find out because I try to find out.
I see others who do just the oposite. At times these are the people we think would try to understand the most.
Mothers, Brothers, fathers, Sisters.
Maybe it is just easier for them to live in denial. Do they truely not understand or do they just prefer to be ignorant and live in the dark ?

artist

06-02-2005, 10:17 PM

dear rbw200, I think with some people, such as my husband, he doesn't really want to know, or can't handle the truth because it scares him too much. My husband lost all of his very small family and the thought of further loss or abandonment really frightens him.

skardykat

06-03-2005, 09:34 AM

Artist, doesn't it make sense that if hubby came out of denial, he would have the urge (as a man would) to make it better. Since he can't make it better, he feels better off being distant about it. Maybe???
Anyhow, I used to want pfamily and friends to walk in and smile and say how is it going? They would walk in the house, knit their eyebrows and say Hawaaya, in a sad voice. Ooo, that would get to me. We got over that, but I'll bet a lot of you see that look on your family's face when they visit. Right??? :highfive:

macfamily53

06-04-2005, 02:17 AM

I have to agree with everything said here. I have people from my church that are really bugging me lately because i do not work at all, and think Im should be doing more for our church than i already do. I should not have to explain myself to them and will not. They have no clue like you say we do not know one day to the next of how we will feel. I commit myself to things that I can cancel so do not feel bad when I do not feel good. :angry: I am just about ready to goi to another church because of two peple that are treating me not very nicely becuase they think I do not do enough. I told myself I really do not care what they think it is what God himself thinks and knows and thats all that matters :P So anyway I know what each and everyone of you is saying. I am so glad that I found this sight. I do have awonderful support group with my family and especially my husband so thats all that matters I guess right. ;) Well take care everyone and prayers and thoughts are with you.

Sincerely Tammy

dumplie

06-04-2005, 08:05 PM

Great thread. Now, where do I start.

1. Yes, I may be smiling and chatting to you, but unless you have x-ray vision, you cannot possibly know how I feel inside.

2. When I drop something on the floor it is not amusing to watch me struggle to pick it up.

3. When I mention pain I mean PAIN. I can recall an appointment at my GP's once where a man in front of me was screaming and yelling while he was in the examination room. Turns out he had an ingrown toe nail. My GP stated that pain is relative !!!!! Relative to what I do not know.

4. Yes, I sometimes fall asleep when I should be keeping the house tidy and most days I am in agony even when washing the dishes. This is not known as laziness this is a symptom.

I hate the way people assume that you are either faking it or are just too lazy to do anything. Sometimes I wish I had a sign over my head that explained to people that I am ill - I am sure that even some members of my family do not understand this illness.

My greatest wish is to be able to let the people who cannot understand this illness have it for a day. Then, they can tell me they understand.

Sorry for venting - bad day........Janine

Melody2

06-04-2005, 09:41 PM

I already posted a response to this thread awhile ago, but through I'd put up another one after some recent comments from people. I'm glad that everyone thinks I look so 'healthy' and 'well', I have been getting a million comments on how good I look lately...I would say to people to please not assume that because I look healthy that I feel healthy. The next question is almost always 'when are you returning to work?' or 'I feel like you, I was tired after work today...it's normal to feel tired at the end of the day'...hello! I feel tired ALL day! It's unbelievable the ignorance of people, really it is. I used to feel healthy and I NEVER assumed that because I saw someone who had an illness but looked well, that they were feeling better and were now just milking their condition. That's ludicrous! Anyway, I know I sound outraged here...the truth is, I'm glad I look well. And I don't want to complain about how I feel so I never correct anyone. But I just wish people would know better in their hearts and compliment me without implying I was healed.

:luck:

Vida

06-05-2005, 12:31 AM

:wave: hi

i am thinking of printing some of the comments from this topic, framing them and putting them on the walls of the bedroom that my sister in-law will be sleeping in when she comes to visit us in august - luckily this time it is only for a couple of days but it will still feel like a week :o

this visit as always will mean that our small two bedroomed house will be invaded by mother in-law (who is loveley :love: ) sister in-law and her 6 year old son who are up at the crack of dawn and there is no chance of peace and quiet untill they go to bed :yawn: last time she visited when she called my father in-law on the phone i heard her say "it would not be so bad if caz got up and started her day earlier" more than a couple of times.

i am really dreading the visit :( but we don't see them that often as we live to far away.

blestby3

06-11-2005, 03:38 AM

[COLOR=purple][FONT=Geneva]
[SIZE=7]The things I would tell someone is:1. just because I am having trouble getting my thoughts across does not mean I am stupid or unable.

2. Just because I look happy & healthy it does not mean I fell well or am not ill.

3. I want compassion not JUDGEMENTor pity.

I am blessed because my husband of 25 years, my children (20,13 &7) are VERY understanding of these unpredictable illnesses(SLE, Fibro,Raynauds, Hasimotos). I own a business that deals with people and many people are ignorant because they have not heard of lupus. I try my best to educate when it does come come up.

Tonya
Sothern California :flowers:

macfamily53

06-16-2005, 05:34 AM

Well I think the one thing I ahve to say that is so frustrating is when I am talking to a friend or so they say they are about the bad day I had and they cut you off. That is not a friend that makes you feel like all you do is complain. So I have come to the conclusion that I will not even discuss it with them. I have afamily member that thinks becuase I am having a few more good days that I should dome how go back to work. She is quite the tight wad anyway and thinks that life is not about your health but about money. Very sad isn't it. :( I am just so tired of people being so judgemental about something they have no clue about :tantrum: Well thats my thing I would like to say.Well take care everyone and thanks for this website it has been a blessing. :love:
Tammy

Mighty Oak

06-24-2005, 12:41 AM

To my family:

Don't panic. Please don't cringe when you hear the news. I know my cousin (in law) has a severe form of Lupus, but Grandma, not everyone with Lupus is the same. So far, I'm dealing pretty well. It's not the kiss of death, it's just a name (and a reason) for why I feel so OLD at 27. You freaking out doesn't help either of us. Just realize that I might not feel well all the time, but I keep going anyway.

To my boyfriend, my love:

I'm very lucky to have you. You always watch out for me even though I know you're always afraid I'm not feeling up to par. Still, you don't have to remind me about my pills twice... just once is enough if you wait until I'm done eating. Don't mention to other people that I'm forgetful if I left my purse behind, just smile, wait for me to get it, and say good bye like I do. Furthermore, don't you panic either. I'm as emotionally strong as you are physically strong. We can easily be there for eachother regardless of this disease.

To my coworkers:

Every one of you seems to know a Lupus patient. That's remarkable! Do me a favor, give me their number so we can chat directly sometime. I'd be willing to bet that your cousin who's "fine" is as sick of hearing how well I'm doing now that I'm on meds as I am of hearing how "great" they are now that they've been put on prednisone. We can talk directly. Also, those folks who say their relative/friend/ so and so with Lupus is "fine" probably doesn't spend enough time with that person to know how they're doing. I know you're genuinely trying to help give me some hope (my coworkers are pretty sweet people), but I have plenty of hope all by myself. I have TWO doctors who listen to me, have had very few flares, and am doing my best. Don't chuckle if you walk by during my prep hour and see me wrapped in a blanket wearing gloves in the summer. I'm cold. I'm doing what I can to warm up. It's not funny, it's necessary.

To my friend with hypothyroidism:

I love you. You get it. Let's both try to explain it to the rest of our moron friends!

To my instructors:

Sometimes I have trouble making deadlines. This does not make me a bad or lazy student. Please make every effort to accomodate me however you can. I have a learning disability and a chronic autoimmune disorder. I should get a little slack now and then. Thanks so much to those of you who will.

To my future students:

I care more about your success than any of you know. Chin up, and do your work and I'll make you a deal. If you work to learn for me, I'll make sure you get the cool substitute if I'm out sick. I won't be too cranky with you when I'm exhausted if you don't whine about standing up to do some exercises in class (to wake your teenaged butts up). Don't make me fight you for assignments. I'm ill, I have learning disabilities, and I still managed to make it this far. You can do anything (including your homework). I'll cut you some slack where it's due, but don't blow things off for no good reason. Respect me, and you'll earn my respect. Also, teachers are real people with real lives outside work, just like students are real people with real families and real lives outside school. You never cease to amuse me when you get shocked to find out something new about me (like the fact that I date, have friends, stay up late sometimes, etc.). Thanks for keeping things interesting for me.

To my friends:

Sometimes I'm up, sometimes I'm down. It's nobody's fault. Not mine, not yours. No, I'm NOT mad at you just because I've been gone awhile. Lighten the heck up!

I think that's about it for now. I think I'm coming up on a flare, but I'm optimistic. I'm seeing my rheumatologist on the 1st, I'm getting bloodwork Monday, and I'm going to explain all my concerns and past reactions to prednisone. My doctor is very smart and I'm sure she'll have some other options for me.

--Oak

here

10-07-2005, 06:43 PM

Can't it really be summed up in two statements:

(1) Although you can truly comprehend, just try to put yourself in my shoes. And if you don't understand, then don't pretend to and just say nothing.

(2) Don't flush my privacy down the toilet. My life is just that my life. What gives you the right to gossip or talk about it to anyone but me?

The end.

lullrich76

10-07-2005, 07:13 PM

Hi All,

Great post, I have a few to add.

I have suspected Lupus for 3 years now and everytime I mention it to my parents they tell me, "you don't want to have that!", like I am wishing it on myself.

Or, "you shouldn't be pushing for that diagnosis because you will be labeled for life and have insurance problems because of pre-existing condition." I want to know what is ailing me and screw the insurance. This is my health that we are talking about.

Then they asked my how I am. My usual reply is tired. Then they say, you complain about that a lot, you should really have that checked out, you must be anemic!!! Hello--do they NOT listen to me at all???

Or, people ask you how you are feeling and then when you tell them an honest answer, they say that all you do is complain.

Or you need to smile more (another one I hate).

When you wear a jacket in the middle of summer, they say, You're cold? There must be something wrong with you, it is like 100 degree out.

The best one is Cheer up!! Don't you just want to punch them???

Good to vent about all of this.

Take care,

Lisa

keebler

10-08-2005, 07:21 AM

This is a good thread.
I would say to the lady at church. Lupus is not Aids!!! I can not give lupus to you. :tantrum:

I give up on people (at church) who keep saying but you look so good. So can you help work a big meal to help us out. (that means being on your feet for 5 hours carrying food and whatever else)

To my wonderful hubby :love: Thanks for all the love and understanding.

Take care,
Keebler
:wave:

Shelleyshells

10-08-2005, 04:17 PM

Don't EVER, EVER, EVER say to me...

"It could be worse!" :angry:

Of course it could be worse, but is that supposed to make me feel better? I absolutely explode when someone says that to me.

I do like what one person said though...

"Even though I say "no" a lot, please don't stop asking me."

:love:
Shelley

Mighty Oak

10-12-2005, 07:19 PM

Okay, I know I already posted, but this has really been making me crazy. All my coworkers need the same damned message:

The thermometer I keep on my desk it to reassure me that I'm not crazy. As it turns out, if the temperature drops below 76, I'M FREEZING! Not just cold... not just uncomfortable. Freezing. As in I can't feel my fingers and toes. As in I can't stop shivering. As in, "hand me an electric blanket, a pair of mittens, a hat, and a scarf!" Do not, I repeat, do NOT ~keep asking~ "are you cold?" when you can plainly see that I'm wearing wool mittens. What the ****** **** do you THINK I'm wearing them for? Is it supposed to be some kind of fashion statement? My fingers are white from the cold, I'm shivering, I'm all covered up, and my desk thermometer (a Gallilean jobby that looks pretty cool) says it's 72 degrees!!! I live in a desert. Why? Because I CANNOT HANDLE THE COLD! Please just get the heck off my case about it. I've told you all I have Raynaud's, what it means, and how uncomfortable I am because of it. I can't imagine what would have happened had I lived in Wisconsin. I shudder to think. Do I need to make a general announcement or something? I so tire of smiling and saying, "yep... I'm always cold," to coworkers who inquire.... you want to help me? Get the superintendant to turn on the heater or turn DOWN the air conditioning.

Sorry... that was more of a rant because it's about 68 degrees in here, and I can't get comfortable. :cold:

--Oak

nicole-renee

10-13-2005, 03:54 AM

I am new to this site so i really dont know many of you. I just wanted to let you all know that you have all helped me out tremendously. This topic is the best idea. everything you guys are saying i second here are a couple of things i would tell people without lupus:

First of all i would tell my dad that i am not crazy and that this is not all in my head. I would tell him that i can not will this to go away that this is how i am going to be most likely forever and that it would be a ton easier if he would just see that and most imortantly i would tell him that im not faking or being over dramatic!!! :tantrum:

I would also like to tell all my friend and family just because i dont look like i feel HORRIBLE doesnt mean that i feel fine!!!!! and when i tell you i don't feel good im not saying i feel a little sick i am saying that i feel so horrible im not sure exactly how im gonna crawl out of bed!!! And i want them to quite telling me its my fault i feel this way!!!! :hissy:

I am so thankful for this topic it feels so incredible to vent to someone who really understands thanks a million :love:

best of luck :luck:

Nicole

jem05

10-14-2005, 12:58 PM

Hi all,
I would say just because I have lupus it does not mean I am any different from anyone else, treat me the same as you normally would. :P

foreverfriends1

10-16-2005, 11:44 PM

. Please, dont send truckloads of stress, my way. I am barely coping. I do not want to have Lupus SLE but antinuclear tests - liver function tests & other tests show, I have some kind of autoimmune condition. You wont catch it....

Please, dont ask how I am and then walk off, BEFORE I have been able to explain. I may not be able, to keep my appointments, or be there, for everyone - if you waited for the answer you would know why:)

Why, when I am so sick do I have to prove myself? Why, when I agree I am possibly a hypochondriach or admit illness is All in My Head, will nobody listen?

If I had a penny or "dime" for all of the times i had been told this was "all in my mind" I would now be a Millionaire.

As the pain is so bad - what does it matter "what i am diagnosed with" I thought friends were there for each other - nOT just when the going is Good and recently I need to say the same to my husband. foreverfriends1 :love:

jessi1976

10-17-2005, 01:00 AM

I love this topic!

I hate the policeman- by this I mean the auto immune police. I have diabetes and SLE and if I take a bite of something with sugar they are all over me and now with SLE they are constaantly asking are you ok! when i obviously am not, why should they ask-bring it up one more time, and if they are askin then they probally already know the answer!

Great post!

Jessi

kinnikinnik

10-20-2005, 09:32 AM

sometimes i wonder how'd they be if they had to walk a day in our shoes, just one day - but really, i wouldn't wish any of this on my worst enemy.

i'd ask them - whatever happened to the golden rule? - the one that says "do unto others as you would have them do unto you."

that is what i'd say...

cat99

10-20-2005, 10:24 PM

Hi style_emoticons/<#EMO_DIR#>/wavey.gif ,
I would like to say to non-Lupus sufferers:

Please don't try to understand my illness when I don't really understand it myself.
Just believe what I say.

Wallypop

10-22-2005, 02:43 PM

By way of background and introduction, I am a "non-Lupus sufferer." (I'm also not a fan of "labels" but that is a different topic. style_emoticons/<#EMO_DIR#>/biggrin.gif) I am also very much in love with a "Lupus sufferer." She actually pointed me to this site when I got scared by some things I read elsewhere.

style_emoticons/<#EMO_DIR#>/Thanx.gif to everyone who has posted on this thread.

I recently devoured and studied this thread. I needed to know, I needed to understand... or at least I needed to attempt it. By the time I got close to the last post I was even more in love and felt a greater appreciation for the depth and strength of this woman I love. It's hard to call her a "sufferer."

As I read your posts I found myself craving even more - not in a morbidly curious way - but in an almost desperate way born in the love that makes one feel his partner's pain. My heart ached and I wanted to post, "Please don't harbor these thoughts - tell us! Help us understand... or if we cannot understand, help us learn how to share this with you."

And I sat here thinking "What is that my love would tell me? Are there things she wishes I knew and understood? Are there things I would tell her... would tell you?" I almost registered and posted them. And then I realized - that wouldn't be wrong but it wouldn't be right.

I needed to tell her. And I needed to ask her. Of course we'd talked... and I THOUGHT I understood... I remember well the day when I said to her, "I don't love you because of your Lupus. I don't love you in spite of your Lupus. I just love you." I meant it and mean it, but every part of each of us is also part of both of us. So interwined we are that her Lupus is mine... or perhaps more accurately it is no less a part of "us" than any other part. Your posts here helped me see that there was more, much more that I needed to understand about this part of her. I think for now the best way to say it is this: It's sometimes hard to know when to hug you and how hard to hug you. Maybe there's a new thread start... what "non-Lupus sufferers" would like to say to those who sufffer. I want to get the hugging right and I need your help. Please tell me when... and tell me if it's too hard and it hurts...I didn't know...

By the time we talked, my heart was full and a lot of thoughts and feelings tumbled out. But somehow in the midst of it all, we arrived at a new level of understanding of how we are going to share ALL of love's challenges, including those associated with Lupus. We're not finished yet, but we also don't really want to be finished. We are a work in progress and always will be.

So thank you to those who said here what they want to say.

Please, please... don't just post it here. Say it to those who need to hear it... we may not know we need to hear it... sometimes our seeming insensitivity is ignorance... and sometimes it's because we are, in our own way, suffering with you and we don't want you to see us crying. Having read this thread, I know you understand that because you haven't always wanted us to see you crying.

Maybe sometimes we just need to cry together.