Strange comment!!

[Bunnylover]

I went to see a physio today as I had a car accident 2 months ago and thought I would take up the Insurance companies offer of an assesment as I thought they would give me excercises to do.The lady I saw was lovely but when I mentioned my Lupus/connective tissue problems she said "Oh you don't look like you have Lupus"!!!! I was abit taken aback and never said anything but now I'm thinking is there a 'specific' look ? I know I don't have the malar rash and probably look quite well to people (although those that really know me can tell how I feel).I'd be interested to hear what you all think,thanks.XX

[cheryl1972]

Hey nope majority of people look ok. I know i did and no one ever appreciated how unwell i felt or how much pain I was in... its one of the bad things about this disease, I often got told I was faking it!

[Bunnylover]

Hi :) I often get told "you look well" and I'm actually feeling dreadful! I think people mean well but just don't understand!

[Lotus]

Hi :) I often get told "you look well" and I'm actually feeling dreadful! I think people mean well but just don't understand!

Hi, I also never got the facial rash and everyone thinks I look like I have no problems....... maybe that's one of the worst things about this SLE. Of course I don't want a butterfly rash on my face either!
xx

[Soundy]

I look well most of the time regardless of how I feel...I do
get circles under my eyes when things have been bad and
not slept much...

something funny is there is a little girl at school who is autistic...
she runs off emotion... she will say I am so sad and look like
the end of the world is near and five minutes later is on top
of the world... I sub in the lunch room and volunteer at school
as much as I can ... Maggie has kind of adopted me... calls me her
lady and if she spots me I have to take some time and hug on her
and get her back to class...

she can see when I am not feeling good when no one else can...
she climbed in my lap one day and lay against my shoulder to make
me better... friends and teachers have decided when I say I am
fine that they will take Maggie's word over mine...she has asked
me you OK? and when I answered I am fine she frowns and tells
me not to lie to her... I am glad not everyone can read me like she
does... but also sometimes wish that they could see how I am
even when I look fine

[peonyprincess]

I probably do not look like I have Lupus either. Maybe we should make it easier for the public at large and get a tatoo across our forhead that says LUPUS. Never ceases to amaze me the ignorance that is running amuck.


Nancy

[Flibble63]

A neighbor of my mother's asked her what a person with lupus looks like. My mother just laughed at her and said "they look just like regular people." I wanted her to add except when on a lot of steroids then We look like bad tempered chipmunks. Laura

[Andyc95]

yeah, It was really hard before I was diagnosed with Lupus, I looked fine but felt really dreadful so people thought I was faking it and all that but when I was diagnosed I could say "ha, see, I wasn't faking".

When I wasn't eating people kept commenting "you look really thin" and I still sometimes get "you look pale" but I've only ever had the butterfly rash once - when I was in hospital.
Now its completlety different, I'm on loads of steroids and as Laura said, I look like a bad tempered chipmonk :rotfl:

Bye for now, Andy

[wheeliefab]

Now I'm more stable with my lupus I get told how well I look, but I take it as a compliment that I'm no longer underweight (I was a thin person who lost weight as I first got ill), and that the dark circles and bags under my eyes are reducing.
Theres a nice web site "butyoudontlooksick.com" for folks who are ill but don't look it which has all kinds of products (t shirts etc) you can buy. I also really like the "spoon theory" on this site, which has helped me explain my energy levels to friends etc

[helloos]

I was staning in line a few months ago at the pharmacy. In front of me were two people, an old man and a woman about 45 or so. She was very talkative and started to talk to the man and said I've had two heart surguries, two strokes, a tumor removed off my brain, and few other things..... I was like oh my goodness. The conversation started by her was because she had the same bday as the old man. So I am thinking, boy does she have a lot of problems the poor thing. Then he says what he has, cancer in the past and now has reoccuring cancer in the colon. I was counting my blessings quietly when the two turned around and looked at me and said "gee you look really healthy". I don't know if they were wanted to me to say " I have......bla bla bla..... I just laughed it off and they continued on.

[LolaLola]

Hey Andy, Glad you keep cheerful. I am smallish so tend to look like a very serious hamster with stuffed cheeks. Also am on med. which turns me yellow like Bart Simpson. It is unfair that we are expected to conform to people's idea of illness. Luckily, if you can call it that, I must look ghastly as seldom get accused of looking well.
I have known a lot of lupies and we all look different.
x Lola

[Bunnylover]

Thanks for all replys :) (thank you to whoever moved it,sorry I posted in wrong place :blush: ) I feel so much better now.I know I'm very lucky that my symptoms are mild compared to alot of people but they impact on my life and it's not nice when people doubt your illness.Take care everyone xxxx

[Soundy]

You know what really sucks:?...looking in the mirror after
someone has made a comment on how you don't look sick
and thinking to yourself ... they're right ... I don't look sick

Can't really type how I felt one day looking at myself thinking this..
it was not a good feeling... I don't want to look sick but it
is an odd sensation if you can call it that to look OK and
feel so bad

Y'all probably understand what I am saying even though
it isn't typing well

[Bunnylover]

I know exactly what you mean!!! You don't want to look sick but it's as if that's the only way people will believe you!! I'm so grateful to everyone on here as you all understand :) Like I said my family and my close friends are wonderful but it's others who probably don't mean anything by what they say but I guess I'm just sensitive and take it as they don't believe me!

[halfpintfl]

:) ;) Hi Bunny, This is one of the hardest parts of having lupus.
Everybody wants to see a sign. There is a sight that you can google
called>butyoudontlooksick< it is a very good dtory, but it will only
help you feel good for a little while. And everybody wants to see
the lupus face mask, when in reality, that story began as a legend
while making the word lupus from the word wolf. As I remember, and this is not a good memory, but, I remember that it is something like between 3-5% that get the mask. Do you realize how few peeople that is? Yes, it gets me down too, and I have lost some
of what I thought were my friends because of this. Now I realize that they wern't my real friends at all. I just tell people that it is an invisible disease, and that the main thing is that I can never make plans, or I make them and if I have to cancel, it is not about them.
If you had no teeth, had black dirt on your face, and wore only torn
clothes, Everybody, everybody would be rushing to your aid, and that of everyone on this board. So, the real friends that you have, the ones that stay, tell them to ask what they want to know,and you will gladly tell them, that's what I do. Be well,hon.:wink2:

[Lily]

Hi Bunny,

I think sometimes people make comment without even thinking, and maybe they even make comment hoping it will make us feel better knowing that we dont look that sick a lot of the time.

I know my dentist made a remark once, I was a bit peeved, but in reality he meant no harm and he has grown to understand my disease a little better over the years. He also realises its a touchy subject with me :lol:

He said to me early on you dont look like someone with an autoimmune disease, my reply: what does someone with an autoimmune disease look like exactly? :p :rotfl: Point taken and he shut up after that hehe.

For the sake of accuracy, I think the malar rash is present in around 30 percent of lupies, and sometimes its much more noticeable than others.

love
Lily

[hshiplett]

Hi Bunny,
I am told often that I look so healthy. I have SLE. I have never had a facial rash. I have a 14 month old. He keeps me busy, I work full time (I teach first grade), and I work out 3 to 4 days a week. I lift weights and take a spinning (cycling) classes. I work my you know what off to keep the weight off.

Today I was in my spin class and I could barely keep up. One of the other regulars kept joking with me...he knows I have Lupus, but he thought I was faking and just being lazy. Truth be told, I was just tired and drained from the week. I had hardly any energy.

I have also had other teachers I work with make comments. I guess people who are not living with Lupus or have a family member or close friend with the disease will not understand until they educate themselves.

[Mariposa]

Sometimes it's very hard for people who don't know you or don't know anything about Lupus to believe you're sick. :shrug:

But to me, is more frustrating when family and close friends who really know you, don't believe you have such thing, just because you don't look sick. :(

My sister is still in denial. My mother was in denial for about a year and a half. Then one day, she was watching a new soap opera on TV and one of the characters happened to have SLE. :eek:
I remember that she called me immediately after the episode was over, just to tell me that Lupus "Could be serious". :huh: Like if I didn't know that already.:lol:

[raggedyann1]

I have learned that very often people are just trying to be kind. I have also learned that some of my friends from church are comparing to how I looked when I was really in a bad flare. My face shows my pain when it is real bad.

My comments to my friends and others that know me help them understand that I am not necessarily all that well.
Some of my answers are
I am hanging in there
That lupus blush will fool you everytime. (I don;t get the malar but I do get a faint blush that looks like I have put on blush)
Well I am some better today thank you.
Today is a pretty good day.

All of those comments help me be kind back and let them know that it is day to day with me. I have a very few friends that will say to me, tell me how you are really doing and then I will.

My suggestion is that as Lily also said not all people are judging us they are trying to be kind. If you are like I am, at home most of the time,they are so glad to see that I am out of the house.

I have the gift in public places of needing a wheelchair, it is a gift in that I don't have to deal with looks when I park in a handicap parking space and I am automatically accepted as a person with something wrong with them. I know that there are many comments that are not meant to be nice. Just with people you know give them a little slack.

Karen

[Sage Hen]

My Internist told me the same thing! He was the one who told me I had lupus. I remember thinking..How am I supposed to look? My neice is a phisio therapist and she made the same comment. I felt like I had to defend myself for one instant and then thought to myself that the comment showed a lack of knowledge about the disease..Strange, Isn't it when such educated people say such ignorance?

Sage Hen,

[Bunnylover]

I can't believe how many of us have encountered this problem!! Most of the time people are genuine and think they are saying the 'right' thing,but it's those who have that doubting tone that upset me as I feel I have to justify myself! Well I've decided that from now on I'll just smile at the 'doubters' and appreciate other comments as being well meaning :) I count my lucky stars that I have found this website and all you lovely people who really do understand.I hope I can help someone on here one day.Love and best wishes to you all.

***** Friends are like stars you may not always see them but you know they are always there *****