Straight talk to non-lupus suffers

[jarsofclay]

I was reading through the post on what to tell non-lupus suffers and thought I would start a second thread because I would like to respond. So many people have some many passionate feelings on this subject. And, well I know exactly how you feel.

How do you tell people to have compassion?

How do you tell people to stop the mocking?

How do you tell people to be straight forward and honest with you?

How do you tell people that if they honestly think so little of you to just forget you?

How do you tell people to live by the Golden Rule?

How do you explain that every time you see a parent running with their kid, playing outside, riding a bike, that your heart breaks for your own kid?

How do you explain that you feel like a failure because you can't do simple task?

How do you explain that every time your husband looks at you, you wonder does he still love you? Does he just put up a front? How can he live in this H**l?

How do you explain that there no matter what life is different... you can make the best with what you have, but there is no way to explain all that you have lost?

How do you explain that it hurts when you don't know what to do, how to handle your symptoms, etc.?

Everyone has their own theories, their own opinions, their own gossips, their own cures for you to try.

What do you say?
How do you say it?

I don't know... maybe you say nothing

Maybe you just live one day at a time.

What do you say?

Nothing.

As I see it you can weed out the bad seeds and pray for supportive friends. Either way... I guess you say nothing because I have found it just falls on death ears in most cases. And, if it is not death ears, then it falls on hateful foolish lips.

Just pray for compasionate ears. Ones that know they will never walk in you shoes.. know what it is like and have the wisdom to understand that it is impossible to try to.

Perhaps this is sappy.. take it for what you wish... but I guess that is what I would say to non-suffers...

nothing

[liveseymum]

That is so true.

Tell them nothing. Else it gets twisted into being all your own doing.

TRACY

[peonyprincess]

style_emoticons/<#EMO_DIR#>/coffee.gif Good Morning!!

How very true are your thoughts. I have found that there are two different types of people when dealing with "us". Those that do and those that dont. I have been very fortunate in as much as our close friends completely understand autoimmune disorders and how they effect one's life. My best friends has MS, her mother-in-law has Huntington's. We are like one big family. My friends parents treat me like their child and at times become very protective, example being, we went Xmas shopping and they wouldnt let my friend Laura and I carry in the bags. We were told to go sit down and rest with a cup of coffee. It is nicve to be pampered, but it is also nice to do for ourselves and our friends and family can somehow sense those times. My parents are not as receptive or understanding of this disease process. My dad will call several times a week to check in and see how I am, my mother on the other hand may call once every other week and wants to complain to me how I need to take my meds, change docs, etc. My step-dad just doesnt say a word. My immediate family (husband and kids) try very hard to understand. They are wonderful at picking up the slack with house chores, etc. They understand when I dont feel like going out and socializing. They understand when I just want to sleep. When I do get my burst of energy, they are right there ready to go. There have been many times that I have had to pass on things with the kids or our friends for fear of exposure to the flu or just plain exhaustion. I not only feel left out but I feel that I have let people down and that I am a big loser. Fortunately, my family tries very hard to pick me back up. If I could give them the world I would.

I have found that many people state they understand and all, but they turn and mock you, etc. Even my employes (I am a RN) has very little sympathy. I am currently recovering from a major unexpected illness and my employer "let me go" because I am unreliable and not dependable. I did not ask the good Lord to give me this disease and to forever change my life, but for whatever reason I have it. I feel for everything that happens to you, there is a reason. I have discovered that I am more understanding of those that move a little slower in life. I now take time to notive the little things that normally I would have rushed thru. I cherish the times that I have with my family and my friends. Yes, I long for the things that I used to do, but those times are gone and I know that, all I can do is make the best of what I have. Do I get depressed, you betch ya. I have my days of self-pity and I feel that is exceptable for us. When I get that way, I have also found that my friends and family are there and try to scoop me up and get me back on my feet.

While others sit and criticize my life and what I do or do not do, I wish they would understand but to do that, they would have to truly experience it for themselves, and I would not wish any health problems on anyone. I decided that if people that come into my life cannot understand what is going on with me and understand what my family and I are going thru, then I have no time for them. Their negativity is dangerous and I ban them from my world (so to speak).

All I can tell others that are dealing with people who are heartless, decide what is important to you and your health. Surround yourself with people who truly understand what is going on and rid your life of the negative. I know it is hard, but what we need is postive things in our life. We deal with so much disappointment, we dont need extra burdeons to carry around. Smile and realize that while our lives are not perfect, we can make what we have the best. Cherish everyday that you have and try to find something positive that came of it. When you go to bed at night, recall what goods things have happened to you during the day. I have found that helps me for the next day. Whether we realize it or not (we dont always...lol) we have been blessed. We take time to "smell the roses". We look at others differently, with respect and understanding. We cherish the little things and rejoice. We notice things that others are too busy to notice or except. While it is difficult to keep ones head up all the time, try to do so, it is totally worth it. The smile from a child, the giggle and laugh from our friends and the hugs and caring support we get is priceless and those are just a few things that this disease cannot strip from us.

Nancy

[Vida]

style_emoticons/<#EMO_DIR#>/wavey.gif hi

like you i feel like saying nothing to most people because they don't understand and as my illness (PBC) has cirrohsis in the title it is often assumed that i have a drink problem style_emoticons/<#EMO_DIR#>/mad.gif if i do it's down to drinking to much coffee style_emoticons/<#EMO_DIR#>/coffee.gif

but i am fortunate in having a husband that is really understanding and will protect me from nasty comments when i have not got the strength or simply can't be botherd to waste precious energy style_emoticons/<#EMO_DIR#>/wub.gif

i also have a friend who tries to make sure i don't overdo things without being patronising style_emoticons/<#EMO_DIR#>/wub.gif

style_emoticons/<#EMO_DIR#>/flowers.gif style_emoticons/<#EMO_DIR#>/flowers.gif

[jarsofclay]

You know the other night I was up late and had the tv on.. Didn't realize what I had put it on. I was laying down and not feeling too hot so didn't want to get up and change the channel, but it was really hard to watch the movie.

I think if non-lupus suffers want to know what my life is like, perhaps they should watch the movie Beaches. Although, I am not dying, the movie does an excellant job of protraying what it is like to go from a successful healthy person to one that battles most of the moments of their day with fatique, pain and other problems. It also shows what effect it has on the child in her life and how even simple things can be very hard.

So, although I could never tell somehow what it is like or how I feel... because words have no meaning to most people I think... I think they might understand it if they watched Beaches.

Anyway, that is my opinion.

[helloos]

Did you ever see the movie Lord of the Rings. Well if so, you know who Smeegle is? Maybe I didn't spell right.

Well, I feel that everyone is Smeegle. The good side and the evil side. All one person. Or should I say the Lupus side and my side.

So, I fight with myself about a lot of things as if that voice voices it's opinions. For instance, it makes remarks that I would love to say to others that degrade, make fun of, etc.... then the me side, says nothing and swallows it and doesn't say anything. Not to mention that it is GOOD thing that I don't say the words I thing and the replies that are in my head.

So, I call it Lupme. Lupus plus me. Rather than Smeegle.

Make sense?

[alobreto]

Yes, Paula, I understand exactly what you mean! I hadn't thought of it in those terms, though. You're very insightful here in sorting that out and making the comparison.

As for what to say to people, it really is an individual thing. I find that the best response is the one that provides only the information asked and only if you feel comfortable in sharing the information with that particular person in that specific setting.

You can always fill in more later, but you can't take back words once spoken.

I look at it the same way I looked at telling my kids about the birds and the bees. I only answered exactly what they asked-- no more and no less -- and only as much as would be appropriate in that setting. I could always tell them that we could talk privately about their question at a later time.
Angela style_emoticons/<#EMO_DIR#>/flowers.gif

[dumplie]

I agree with you all. I tell people on a 'need to know basis'. My husband and son know how the illness affects me and my 10 year old son could put a lot of 'negative' people to shame. The only people in my life that know are my immediate family. However, my mother made the mistake of telling my aunt who was generous enough to tell her that my pains are all psycological and that it is mind over matter. I am too much of a lady to tell you my response.

I did start off by wanting to tell people but I do not feel I need to justify myself to anyone-especially not the man at my local supermarket who shouts out me when I park, with my blue badge, in the disabled bay. I guess that to him I am a youngish woman who on the outside looks fine.

Even though my close family know I still have to contend with silly comments. They cannot understand it when I cannot go out after the school run as I need to sleep.

I sometimes feel that if I could let then walk in my shoes (if they can bend down to put them on) they might have a better idea of what it is like to have this illness.

I never look for sympathy and I try to battle it the best I can. That is why this site is so important to me as I know that people here can understand what it feels like.

Take care everyone........Janine

[rwb200]

As far as the mind over matter person I think I would tell her she is right it is mind over matter. Her Oppinion doesn't matter so you don't mind if she keeps it to herself.
People with out Lupus can not possibly understand just what it makes a person feel like and other people with it may not completely understand it either because it effects everyone a little diferently.
How do you understand what even the doctors don't understand. If you think they even come close read CritikalRN note again.
People don't understand and many do not want to take the time to try and understand.
The good news is that there are some who are trying. I got an e-mail today that the today show has started supporting Lupus Research, it asks everyone to send them an e-mail and say thank you for doing it. I did and hope many of you will as well.

[RAD1]

Hello to everyone,

I like the last reply, the mind and matter reply just hits the spot.
Yesterday at my Dental appt. my dentist and I were discussing Lupus and I mentioned the fact that so many people think that we can just make ourselves better and that it is all in the head. His reply encouraged me, he said , don't listen to people like that, they don't know what they're talking about and the garbage on tv that doesn't respect this as a serious disease, just don't watch it! This is the kind of encouragement that people with Lupus and related diseases need to hear.!!! Not the old "you don't look sick" c*#p and "you just need to snap out of it " replys. I just do not tolerate these kinds of people, they are not smart at all.

Your friend'
Ruth

Oh yeah, I know a couple of real life "smeealls" only they don't have a light side, just dark. Seriously.

[swecri]

<div class='quotetop'>QUOTE(dumplie @ Jan 29 2006, 07:17 PM) Quoted post</div><div class='quotemain'>
I agree with you all. I tell people on a 'need to know basis'. My husband and son know how the illness affects me and my 10 year old son could put a lot of 'negative' people to shame. The only people in my life that know are my immediate family. However, my mother made the mistake of telling my aunt who was generous enough to tell her that my pains are all psycological and that it is mind over matter. I am too much of a lady to tell you my response.

I did start off by wanting to tell people but I do not feel I need to justify myself to anyone-especially not the man at my local supermarket who shouts out me when I park, with my blue badge, in the disabled bay. I guess that to him I am a youngish woman who on the outside looks fine.

Even though my close family know I still have to contend with silly comments. They cannot understand it when I cannot go out after the school run as I need to sleep.

I sometimes feel that if I could let then walk in my shoes (if they can bend down to put them on) they might have a better idea of what it is like to have this illness.

I never look for sympathy and I try to battle it the best I can. That is why this site is so important to me as I know that people here can understand what it feels like.

Take care everyone........Janine
[/b][/quote]

[Angelee]

I agree with all of you. Most of the time I am too frustrated with my condition to be bothered trying to make someone else understand it. Half the time I don't feel I understand it or can articulate it anyway. Plus once you tell people then they want to put their 2 cents in which most of the time is something that insults your intellegence or just plain insults you. Being treated like a hypochondriac, or a whiner or a freak hurts, hurts almost as much as the physical pain. If you dwell on the fact that people don't understand you just waste your time. They can't understand. You can't explain it. The best you can hope for is love and support that just doesn't ask for an explanation or understanding, it just is. It's a hard thing to find, but I know it is out there. I hope we all manage to find it.

-Angelee-

[cuddles]

style_emoticons/<#EMO_DIR#>/ok.gif hi everyone.....you's are all so very right....every reply has hit home....it's unbeleivable how alone you tend to feel at times, until you come here..... style_emoticons/<#EMO_DIR#>/scaredy.gif at times I feel down when a family member trys to diagnose me....or you hear I have a friend that has the same symptoms as you and this is what they are doing!!!!! Yuk....I know they may mean well, but sometimes it is frustrating, especially when you just started feeling like you have gotten somewhere with the results from the doctor....also, it is frustrating I find when your meds are working for the most part and then you have a comment made, oh that is just from your hormones changing.....just don't understand sometimes.....I find when you post something here your not questioned or made to feel like you have to prove how you feel......It is also wonderful that everyone can just share their experiences and lend a friendly ear or shoulder.......makes you wonder how many people out there that fel like they are alone and haven't found this site yet........everyone here is great..... style_emoticons/<#EMO_DIR#>/flowers.gif

[christine]

i agree totally with cuddles ... when i was initially diagnosed with lupus,,, many well intentioned family members to distant relatives tried to diagnose me and ask me to try various medicines or cures,, from traditional to alternative medicines,,, some even say it is my fault for having lupus..sigh,,.

that is why, i have now made it a rule that my lupus is a on a need to know basis, like wat janine say, I never look for sympathy and I try to battle it the best I can. That is why this site is so important to me as I know that people here can understand what it feels like. here, i know that i am not alone

thank u all for alwiss being there for each other ,, take care alwiss
style_emoticons/<#EMO_DIR#>/foryou.gif

[Trish10]

Because I know that so few people know anything or much about Lupus I have told very few people I have it. My sister only recently realized how it has affected my day to day life. She did not realize that I needed to rest every afternoon after work before any evening activities.

My closest friend who sees me the most truely understands how this affects me. She can take one look at me and say, "Your Lupus is active isn't it". She is always right.

No one associated with my work knows. When I'm having a rough time, I put on a happy smile and bear it.
I'm naturally a very private person and choose carefully what I tell and to whom. I've been able to "hide it" for 9 years with the same employer. Right or wrong that is my choice at this time.

[chantal]

Janine I?ve read ur response before and again it really hits home, especially the man at ur grocery store who yells at you when you park in the disabled bay because u look like a young woman who on the outside looks fine. I think we all feel this way at some point even if we are not getting yelled at but you can just tell what people are thinking in situations like this, just like jars of clay said its just sometimes best to say nothing because people like that don?t deserve the time of day style_emoticons/<#EMO_DIR#>/tongue.gif

[Wendy0413]

Wish there was a way to get my employer to understand and be compassionate. Now that she knows I have Lupus I feel like I have a target on my back. style_emoticons/<#EMO_DIR#>/crying.gif

[IMMARYD]

I have known of my Lupus for 20+ years. I was diagnosed at age 20, less than six months after getting married and never having been in a hospital in my life.

Of course, all of my large family and my husbands' was concerned and knew of the diagnosis. Those first few years, everyone was overly helpful and wanted to know what it was and how it worked, etc. As you've all experienced, the newness wears off and 'do you still have that?' or 'aren't you any better yet?' lingers.

This past weekend, my sister-in-law spoke learned of someone who has lupus and is seriously ill. She was very concerned and wanted to know why this person might need Chemo, etc. and asked many questions. She has NEVER shown interest in my situation and seemed surprised that I'd experienced anything similar. Frustrating? Yes? Worth getting upset over, no way.

My own sister, whom I consider to be fairly close, asked last winter, after my third week of not being able to leave the house, "oh, are you sick again?" I have to say, I was not as cool and unaffected by her comment, I clearly stated, "again? Not again, still. And if you bothered to call more, you would know that." Of course, I felt horrible later, and the guilt set in.

I agree with the others, don't look for sympathy. I often feel like I need to justify why I can't go, why I can't lose weight, etc... but in the long run, will it truly make any difference?

I know in my mind it's better to accept yourself for who you are and how you are and try to let stuff bounce off without hurting too much, but in my heart ...yes, it hurts. Sometimes a lot. Especially when one of the few people you thought understands slips up and says something, or maybe it's a downtime for you and you truly are more sensitive, but those comments hurt the most and it's very hard to let it go, but the sooner you get over it and move on, the better.

I know the signs of chronic fatigue, but I still fall into the trap occassionally of thinking, "maybe I've become lazy." Or worse, "Maybe I'm 'using' the lupus as an excuse to be lazy." Funny, when I feel better and the fatigue eases, I can't lay there without feeling guilty or wanting to get up and take care of things. Is that laziness?? No, and I can look back THEN and see that it was that frustrating fatigue again. But comments, negative words or just expressions can cause us all to feel that way.

This is a wonderful support group and I wish I'd looked for something on-line sooner. My experience with actual support group meetings has left me more depressed than when I went with such negative things to look forward to, here, the topic you are interested in, or the things you are currently experiencing is all you need to address at one time.

It's so nice to know I'm not the ONLY one going through it, and I'm really NOT lazy, or crazy!!!

IMMARYD

[Paulin46]

Thank you for all your responses.

It is so encouraging to read that there are those who do understand.

WE UNDERSTAND, and I am thankful for that.

Great responses everyone..... style_emoticons/<#EMO_DIR#>/woohoo.gif

[BethannUK]

Just something I overheard in outpatients yesterday-
one of the lupies in for a treatment told another patient she told people she had a rheumatoid arthritis condition, because it still made sense but people always were more sympathetic than if she said Lupus, when people said "Isnt that just a rash?"

I do understand about the need to know thing tho- I have a diagnosis that not even the doctors understand it seems (LOL!) I cant imagine the dull and blank stares I would get if I told anyone else what I had (Adult ONset Stills Disease)... I think I might take up the "type of rheumatoid arthritis" stance when it doesnt really matter and a superficial answer will do.

Labels were meant for tins and jars, not people. Sigh.