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finally_thin
12-26-2012, 05:00 PM
Since I have told people that I have Lupus-I have noticed people telling me I "Look good" or happy or healthy-I am not sure if they are throwing me pity lines-cause I look no different than I normally do. I understand that they want to be encouraging-but it does not feel real. Am I "looking for" things that are not there or has this happened to you.

Saysusie
12-26-2012, 05:39 PM
It might be that their comments fall under the "But you don't look sick" category which is usually bandied about by people who do not understand the disease.
Or they could be genuinely trying to be kind and do not know what the appropriate thing is to say (most people don't). If they are attempting to be kind, you probably should accept their kindness and if you want them to make more informed statements, teach them about this disease and how it affects you.
I found that, when I was working, providing my co-workers with a bit of education about my disease made it easier to work with them because they respected my needs and my limitations. My closest co-workers could even tell when I was in a flare-up and knew that this meant I would be taking rest periods, would not be up for lots of conversations, and would not be participating in a lot of office activities.
The decision how to handle this is completely up to you, but do consider their feelings just as much as you'd like them to consider yours.
I wish you the very best and welcome to our family.

Peace and Blessings
Namaste
Saysusie

finally_thin
12-26-2012, 05:44 PM
You are probably correct-I guess people expect those of us with Lupus-to look worse than we do-little they know-you smile because the alternative is you cry and I have done way too much that this year. Thank you for your very reasoned response.

Lucie

Nicole
12-26-2012, 06:33 PM
I do find if I do anything that looks "normal" to people they think I am better. It is hard for people without a chronic illness to understand how we feel. I think most people want to be encouraging and look at the bright side. They want us to be better. There are a few people in my world who truly get it. Most people don't seem to want to hear the details of how bad it really is.

finally_thin
12-27-2012, 11:43 AM
I do find if I do anything that looks "normal" to people they think I am better. It is hard for people without a chronic illness to understand how we feel. I think most people want to be encouraging and look at the bright side. They want us to be better. There are a few people in my world who truly get it. Most people don't seem to want to hear the details of how bad it really is.

You are absolutely correct Nicole-most people don't seem to want to hear the details of how bad it really is. Even after talking to my Mom all year long about how I felt-she seemed surprised when I said I was in pain every day...my sister who was diagnosed with MS said-it is her way of protecting herself, cause even when your baby is 51 you don't want to think of them in pain every single day.

sfruth
12-27-2012, 12:16 PM
My friends and co-workers also ask a lot how I am feeling- part of that is the newness of my diagnosis. Co-workers were the first to notice my primary symptom, swollen hands. But, I try to respond positively whenever I can, unless I specifically can't do some things. Other co-workers have other medical issues, so I always ask them how they're doing, too. But I agree that people don't want to hear the details.
The social exchange goes "How are you", and the anticipated response is "Fine". The question may be asked with a bit more sincerity when people know you have a certain diagnosis, but the response they want to hear is "Fine."
The feedback I like is when someone thinks I look better (more rested...) than I did a few months ago.

Ruth

smw
12-27-2012, 09:04 PM
You are probably correct-I guess people expect those of us with Lupus-to look worse than we do-little they know-you smile because the alternative is you cry and I have done way too much that this year. Thank you for your very reasoned response.

Lucie

yeah, i'm glad i'm not the only one (not that i'm glad you're crying). i've found myself crying over positively EVERYTHING lately. it's exhausting, but i can't stop it.

smw
12-27-2012, 09:05 PM
You are absolutely correct Nicole-most people don't seem to want to hear the details of how bad it really is. Even after talking to my Mom all year long about how I felt-she seemed surprised when I said I was in pain every day...my sister who was diagnosed with MS said-it is her way of protecting herself, cause even when your baby is 51 you don't want to think of them in pain every single day.

I also feel like AI diseases are impossible for people who don't have them to fully understand. No matter how you try to explain.

isabel
12-28-2012, 10:28 AM
When I was diagnose with lupus (1987), no many people new about the disease, some of my coworkers just listened, others where curious and some avoid me thinking it was a terrible contagious disease. I was living in Irving, Texas then, so when I moved to California decided I was going to let know about me having lupus just to the people in my supportive group like my family and very close friends, so far no regrets about that decision.