View Full Version : all part of "you don't look sick"

07-17-2013, 09:40 AM
Working for a center for independent living, I had the misconception that fellow coworkers would be a bit more understanding and sensitive to people with disabilities. I guess that only applies to consumers and not in office staff. My lupus has progressed to the point that I'm having stability and mobility issues, hence why I'm in the process of getting a service pup. In the meantime and until the pup is old enough and big enough to be a stability/mobility service dog, I really on my cane. I don't make an issue of having Lupus. I have it, I deal with it. I don't use it as an excuse. I work just as much as everyone else (sometimes more so) and have not asked for any reasonable accomodations even though I could. I don't talk about having lupus unless someone asks. I have lupus, lupus doesn't have me.

That all being said, and maybe its just me, but I'm dumfounded about how insensitive my coworkers can be. "What's the deal with the cane?" is a common question. Or "what do you need THAT for?" Usually I'm a smart alek and tell them that it's part of my ensemble said with a stony face. When I reply "because I have lupus", the response is usually "yeah, so?" SO?????? Then informed, "well if you are hurting, you should go home". Honey, if I stayed home everytime I hurt, I'd never leave the house! I'm going to hurt regardless so I might as well be earning a paycheck! Lupus doesn't stop me from working, it just slows me down a bit and forces me to adapt and overcome which I do very well thank you very much!

Oh how often do I get strange looks out in public as I go about my life with my trusty cane by my side. I'm sure it will only get worse when I have my service dog because afterall Ruziska- "YOU DON'T LOOK SICK!"

So concludes my rant. Have a great lupie day everyone!

07-18-2013, 01:32 AM
If they don't get it, well theirs lost... We have to be positive in everything we do... When it is happening I move on...

07-18-2013, 07:40 AM
"But you don't look sick..."
"Yeah - and you don't LOOK like an insensitive jerk, but I guess we're both full of surprises..."....

07-18-2013, 08:56 AM
Ah, my dear coworkers... yesterday a very heavy shipment of forms arrived. 3 boxes worth. Who knew paper could weigh so much? Everyone walked right by it yesterday, including the boss- the only guy in the office. Same thing this morning. I asked for help and quickly tired of the lame excuses. So slowly, but surely, I unloaded and put away the contents of those 3 boxes BY MYSELF. I am very disappointed with my coworkers at the moment. NEXT TIME the orders can stay where they are. I've done my last good deed. Yeah, you guessed it- I'm paying for it as I write this. Shame on them.

07-18-2013, 11:13 AM

There seems to be no middle road with acquaintances and strangers. I hate to coin phrases but the people that don't matter mind and the people that don't mind matter. I used to wish I could jab these people and have them walk in my shoes for a day. "Oh, I get a little bit of that", "I know what you mean" and "I just push through it" are phrases you can spot coming a mile away.
I also used to say that it wasn't their fault they didn't understand. You know what?....it doesn't matter if they don't understand, they should TAKE MY WORD FOR IT...value me as a person and look closely enough to realise that I'm not a class A wuss and that they would probably give up doing something way way before I would.
Oh dear, I seem to be joining in your rant!! It's a very valid rant tho!!

Unfortunately only we know how hard we work, what pain we suffer and how much willpower it takes us to have a life instead of giving up. Lucky them that they might never understand us....



07-18-2013, 12:16 PM
Just yesterday, somebody ay work asked me how I was feeling, my answer was, " I am in a lot of pain." Her answer," but you look so good."
She was working next to me, when a box I was lifting kind of scraped my arm( right where they usually draw blood) and instantly I had a bruise, the length of a finger, it was dark purple right away. When she saw that, she said, " crap, that box barely touched you" and I said, " Yeah I know, I could show you the rest of my body, it is covered with bruises, which I don't even remember getting". She then said, that she was sorry, for thinking that I wasn't really that sick.
Today the same girl came by and asked if I needed help lifting something.


07-18-2013, 12:56 PM
And since we're on this subject, here's another for you dear fellow lupies: talking with someone and it gets mentioned you have Lupus, or heartburn, or a headache,yada yada yada and the next thing you know, the person you are talking to knows someone who's had that very SAME THING AND THEY died, permanently damaged, blah blah blah. Yeah, like I want to hear about someone dying from the same illness I have. GEE THANKS!!!!! Or when I was in my thirties I'd get "you're too young to have that" REALLY???? does Lupus know that?

And then there's the coworker that I was talking to about my future service dog. I know, by law I have the right to remain silent. I do NOT have to explain the duties of the dog or justify it. However, this is a coworker whom I get along with. So when I explained to her about my stability/mobility issues and how the dog will help, her response was that a. the floors in this office building are "wonky" and NOBODY can walk on them without tripping and b. She has mobility/stability issues too! My response? So get a dog.

I know to look at me you can't tell I'm sick and the same goes for you fellow lupies. I know there are days (moments) when we feel good; when we don't hurt too badly, we can move relatively easily. Days when we get through them without being totally drop dead exhausted. Those are the days my dog will get a day off. HOWEVER, those days are also the exception and not the rule.

Maybe when people tell us we don't look sick, we need to ask them exactly what sick should look like. When they state that it can't be "that bad", ask them what defines bad? Let's put them on the spot. Don't say it if you can't explain it!

07-18-2013, 01:45 PM
LOL maybe we should all dress up like zombies for Lupus Awareness Day and say "THIS is what I FEEL like!"

07-18-2013, 02:07 PM
You could be on to something!

07-19-2013, 01:02 AM
I think this is a great thread......like I've said I'm a stylist and I really have to try and look presentable, so when people tell me I must not be that sick cuz I look good,,, I laugh and tell them "it's all tricks" hair extensions to hide the extreme amount of hair loss, make up to hide my discoid lesions on my face,, polish to hide my missing toe nail, etc. You get the point......Lol

07-20-2013, 07:23 AM
every time i scrape my arm on something it looks awful just something barely scraping your skin. sometimes just someone touching my skin hurts. people do not understand. our bodies are always sore even though we may look okay.