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Discussion Starter · #1 ·
Don't you love it when everything gets blamed on your diagnosis ie: lupus, thyroid, fibro, colitis, arthritis, raynauds (these are my conditions):mad: I mean you could have a hang nail or your eye makeup doesn't look as good as you did it yesterday, "OH...it must be your lupus:eek: [email protected]@##??!!:eek:hno: It used to make me mad now I just look at them like they are crazy when in fact they think I'm the one whos nuts:unsure: Who knows maybe I am!!:lol: Anyway it use to be that my husband a true Texan use to introduce me to others as this is my wife Laura she is from NY, they would be like Oh now we understand why she is the way she is:yes: BUT NOW I am introduced as Laura she is on medication:? As if that explains who I am, now I am known as Laura the one with the disease and on medicine instead of the person I think I am!!:( Anyway I just thought it was funny how everything is blamed on it I know that 8 xs out of 10 it is the disease that is the culprit but then I think in terms of the doctors that things get overlooked just because they think they have already figured out whats wronge with you:(
Anyone else feel this way?:?
Laura
 

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Laura........my name is Nancy, the one with Lupus. That is how my mother introduces me. Normally the last part is in a hushed tone as if I have some contagious disease. Geezzzzz!!!!! I am Nancy, the one with Lupus, the mother of four, the wife to Jeff aka Erkel, a "retired" RN and the list goes on. I am always introduced with some kind of a tag. I am also tired of that. Last I looked on my drivers license it just said Nancy Diane Sommerville. I am tired of being defined by all of the additional titles people give me.

I am also tired, life you of anything that may be amiss with my health, my attitude, etc being blamed on Lupus. If I am grumpy, it is the Lupus, if I forget something, it is because of the Lupus, this list is endless. I am also tired of being excluded because I have Lupus. I have heard, "we didn't invited you to the evening party because you have Lupus and I figured that you would be too tired". I have heard, "we didn't invite you to the party because there was going to be alcohol and you have Lupus'. Again, the list is endless.

While I can deal with the stupidity of how the disease effects me and that sometimes people do not understand the process, it is the fact that I have been excluded from participating . It very much h urts my feelings that I might have been considered a hinderence as opposed to a benefit or a lovely addition. Maybe one day they will get it, but I am not holding my breath.


Nancy
 

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Yes I know how you feel.

I do not tell new people about my health at all, and I prefer it if my husband says nothing too.

I recently joined a yoga group where I am known by my name. It is fantastic. I hang from ropes and all sorts.

The teacher knows what he should, but keeps it to himself. It is a group situation, and we are all too busy working independantly on our individual programs to discuss ailments. We largely work in silence, but when he needs to give instructions or check a position is not causing problems he will say - 'how are your energy levels' or 'how did you feel after last week .... any discomfort?" So if we chose to we glean that one of us has a stiff shoulder, or a bad knee, but little else.

I like it a lot ... but when I have done well and somebody praises me I really have to withold the temptation to say 'yes AND I've got arthritis you know!' It is only since I decided to keep things to myself that I realised how often I actually voluteered information. I think it was anxiety - early days - the need to talk, etc.

Before I went I seemed to be getting myself into a situation where I only knew what I could NOT do. Now I am impressed by all I CAN do, so I resent references to my health now , which is a bit unfair because often people are only really trying to show they care.

Sympathy makes me a bit snivelly, but 'what on earth are you doing with your belly sticking out like that? Pull your waist back for heavens sake!' works wonders for me now!
 

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Yes i'm his wife Vonda,
She has good days and bad days, cuz she's got Lupus
 

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I know what you mean.........but in the opposite end. When I try to tell my mother that something is due to my condition(s), she tells me I read about it too much and that because I read something, that's why I get it. Nevermind that I had the symptom LONG before the diagnosis. Everything that goes wrong with me doesn't get blamed on my conditions, because it seems to her, nothing is related to it.

I wrote in the family section that my mother was finally "getting" it. I spoke too soon apparently.:rolleyes:
 

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it is very annoying.ihave alot of titles
my wife she's no well
you know my daughter the sick one (the runt of the family)
that's ciara her mom has a disease
my sister poor thing she is sick all the time.
i was prepared to change my name when i got married but i meant my last name not the whole lot.
i used to be jackie o' neill now i am classed as all of the above
i to don't get invited to nights out i've heard (it will only remind her of what she can't do anymore poor thing used to be so much fun now look at her)
the best one was wait for it(there's not much left in her let her be with her family):hehe:
but poor things they just don't get it.
take care guys
 

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It is terribly sad that your family members treat you with so little respect. Are they unthinking or plain mean ? It's a form of abuse.
If anybody did that to me I would do the same back to them and see how they liked it. After asking them kindly to stop it

Cheers
Clare
 

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Hi

There are still some people in my life who try talking about me to my husband when they think I am not listening in a hushed voice enquiring into how ill I am, but on the whole most people now seem to respect that I am still me and that I just need to take things at a slower pace. Friends are generally quite good and still invite me to things, even if I am not sure if I am able to go to things, they will encourage me and say 'just stay for a little while'. My mum is my worst problem as she still seems to think I can't do anything and she tries to discourage me from doing anything on the grounds that it might make me worse.
 

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Hi...i go horse riding every time we go away...always have.....well i got knocked off last sept.....and my gp said..."what were you doing on a horse with lupus "..?!!!! :rotfl:jane
 

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Jane! What are the odds? A horse with lupus too!! ha ha.

Jaki i would be so distressed to be referred to in that way though i know how hard it is to stick up for yourself when you feel rough. Rant away here on the site and feel better soon.
 

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I have a friend that helps me out a lot (note - I have no family and only two friends that can help out so this is 50% of my support system) and she is very helpful with a lot of things, but sometimes when I try to talk about something I'm worried about she'll say "Oh, don't talk about that, you're just talking yourself into it!" She used to say it all the time about everything but somewhere along the line either the doctor's agreeing with me on some of the stuff or something she cut it down a lot but she'll still come up with it. LIke its all in my head. :mad:
 

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Discussion Starter · #12 ·
Thanks guys for all the responses glad to see I am not the only one, I try to use humor sometimes like for ex I am divorced and remarried (and like jaki I am the mother with a disease of a daughter named Ciara from my 1st marriage I am also from NY married and divorced to 2 texans) My husband will introduce me to new people as This is Laura my wife shes from NY OH... they say:eek: then he'll add shes my first wife:shrug: so I am like hes my second:lol: :rotfl: Then he'll add she has LUPUS:worried: So then I add yes and I also have hemmoroids(from colitis), acne (from meds), bad hair day and toe nails that need to be painted,:lol: :rotfl: I only say that to people that I feel can handle my humor!! if not I blame it on the meds:lol: :bow: :thumbs:
Its not all bad sometimes I really get people who want to know more about it, my toenails I mean, :rotfl: :wink2:
Just kidding Take care my fellow lupies and don't ride a horse with lupus the saddle is only meant for one person who invited lupus to ride (as if its a person:wink2:
Take care!!
Laura
 

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"what were you doing on a horse with lupus "..?!!!!
:rotfl::rotfl::rotfl::rotfl::rotfl::rotfl:

Thats priceless Jane!

Joan:rose:
 

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OK, so humour me a bit ...

Did the horse have lupus like Jane said?

... OR ...

Did you go 2 up with someone called Lupus?

:love:
 

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scrapperjen;495392 said:
I know what you mean.........but in the opposite end. When I try to tell my mother that something is due to my condition(s), she tells me I read about it too much and that because I read something, that's why I get it. Nevermind that I had the symptom LONG before the diagnosis. Everything that goes wrong with me doesn't get blamed on my conditions, because it seems to her, nothing is related to it.

I wrote in the family section that my mother was finally "getting" it. I spoke too soon apparently.:rolleyes:
Hey scrapperjen :) ,

the same thing happens to me!! No matter how sick I am I am exaggerating and overreacting. Family support is so important with a condition so unpredictable and frustrating as lupus. I really hope your mum changes her attitude very soon. Be strong :calm:
 

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thanks BIGSIS i do find it hard to stand up for myself i like to keep a low profile and not draw attention to myself.But it's a new year and i'm going to say how i feel in future.(crikey i'll let it all out and no one will talk to me):rotfl:
 
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