I don't get it....

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peacesoul
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Date Joined Jan 2007
Total Posts : 2446
   Posted 8/16/2007 4:38 AM (GMT -7)   
Why are people so oddly insensitive?
This is a rant by the way

Everyone I work with knows I am ill a lot and that I have lupus.
When I have my bad days (like yesterday), I pretty much have some trouble walking (joint pain) and am quiet. You can tell by the look on my face, I'm just not doing well.
But I come to work anyway, do my work and really do not complain.
But my coworkers will still come up to me and ask "What's wrong? Why are u walking strange? Home come you look like you've not slept"
Normally I will reply "I'm just having a bad day"
Well yesterday I was sick of all the questions. One guy gets me at the photocopier and says "You are walking funny today, how come"
I turned to him and said "Listen, I have lupus and feel like HELL on most days, but I've explained this to you SO many times and feel I don't owe you an explanation"
I really got b*tchy with him.
Last Friday I worked a 1/2 days (which is rare I leave early), and had to leave quickly cause I was really sick. As I was leaving, I said goodbye and 4 ppl asked and practically followed me to the door asking "Where are u going, are you ok, why are you sick"
ahhhhhhhhhh.......I never inquire about when ppl leave early.
These are only coworkers and not my bosses.
What is it with ppl. Just ask "how are you" Hope your day goes well" etc...
Why do these ppl I work with feel they are owed an explanation?!
If I had cancer, no one would ask.
I'm going to wear a t-shirt that says "I have lupus now bite me"
 
hahah!
Ok rant over ;-)

CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 8/16/2007 8:05 AM (GMT -7)   

Peacesoul:

I can sympathize.  For years I have gotten this.  They want to know the intimate details of everything that goes on with me.  I know it is that they care but it creeps me out and is uncomfortable.  At least it is better that they care than get fired.  I have been fired a lot.  Always at work rain or shine.  I have left hospitals just to be at work on time.  Smile, even though I feel horrible and want to roll over and pass out somewheres.  Just so it doesn't affect them.  I never complain for fear of causing anyone discomfort.  People take off work just because they got the flu, but I can't because I have lupus and I don't want anyone to have an excuse for firing me.   

I am fortunate now.  I have a great boss, who sees I am sick and just sends me home - without reprecusions. I still live in fear though.  Conditioned that way I guess.   This is the longest I ever kept a job - 2 and half years.  I am smart and talented, but I have bad days and good days like everyone else.  Unfortunately, when you are sick, everyone hones in on that.  It is tough to hide it all the time and people get upset with you when you don't tell them and tired of you when you do.  It feels like a no-win situation.  It really isn't their business, but try telling them that.  Best you can do is educate them on lupus and be yourself. 

My friend and co-worker died a couple of years ago from the disease.  She handled the matter so gracefully.  Even though she was sick, she was happy, the hardest worker there and a pleasure to work with.  When she had a bout, she would casually explain the illness but briefy, thank the person and walk away.  No one felt out of place and she still maintained her dignity.  I try my best to be like her.  I have a harder time though.  I don't like to be reminded constantly that I am different or that I have the disease.  I want to be recognized for me and not my appearance or my sudden lack of ability. 

It is hard to not act like you have a disease when you do.  I don't understand what the big deal is anyway.  People are still just people.  Well just some of my thoughts on the issue.  I hope you find your way through it and find a comfort zone.  It is a difficult balance.  Take care - Kristin


 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 8/16/2007 10:05 AM (GMT -7)   
Hi Peacesoul,

I hope you are feeling better today . . . even a little better.

Working is tough enough w/o being ill . . . but add illness to the mix and it is a real balancing act.

When people ask what is wrong with me, I give them the two second answer: "My immune system attacks my tendons and connective tissue . . . that's what Lupus does. . . and I'm thankful my organs have been spared". This gives them a definition, a name, an acknowledgment that I'm ill and a thankfulness that its not worse lest they decide I'm having a pitty party for myself. It has worked quite well and if they have any great interest, they'll ask more questions and if not they have a tiny idea of what's going on.

I hope this helps. It is hard for people to know how to react and this is a difficult disease even for family members to understand.

Thanks for sharing your "rant" as it is likely very helpful to others having the same issues. Lots of people read this forum, but they aren't ready to share, so you have probably helped some people you aren't even aware of.

Blessings!
In His Grip,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's
 
Healing Well:  Lupus Resources
Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org
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peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 8/16/2007 10:18 AM (GMT -7)   
Kris, I'm lucky in that I work for such a large corporation and have been here for so long, I cannot get fired (I can but it would take lots of legal doing to get me out).
My boss gets it, but my coworkers do not. I've explained lupus to them a hundred times.
I know they care and want to know how I'm doing, but really, when they are sick, I don't inquire.
I've had the opportunity to take 3 months off paid, but I didn't b/c I wanted to work, but still ppl are weird about it.

I'm so happy u have a great boss that understand you now. That is soooooooooo important.

Thanks for your input :-)

peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 8/16/2007 10:21 AM (GMT -7)   
AlwaysRosie said...
Hi Peacesoul,

I hope you are feeling better today . . . even a little better.

Working is tough enough w/o being ill . . . but add illness to the mix and it is a real balancing act.

When people ask what is wrong with me, I give them the two second answer: "My immune system attacks my tendons and connective tissue . . . that's what Lupus does. . . and I'm thankful my organs have been spared". This gives them a definition, a name, an acknowledgment that I'm ill and a thankfulness that its not worse lest they decide I'm having a pitty party for myself. It has worked quite well and if they have any great interest, they'll ask more questions and if not they have a tiny idea of what's going on.

I hope this helps. It is hard for people to know how to react and this is a difficult disease even for family members to understand.

Thanks for sharing your "rant" as it is likely very helpful to others having the same issues. Lots of people read this forum, but they aren't ready to share, so you have probably helped some people you aren't even aware of.

Blessings!

 Hi, I'm feeling ok today. I mean I went from a steaming bag of poo to a not steaming bag...haha!
I think from now on when ppl ask I will reply "nothing is wrong, I feel great, I walk like an old lady for fun, seriously"...haha!
Personally, they don't need to understand, I do not owe coworkers an explaination, I think they should really just stop asking. It's rude in my eyes.
It's like a guy that worked here who had cancer, I didn't inquire daily why he was sick, It was not my biz.
Thanks for listening to my rant. I think as sufferers, we take everything too much to heart. We need to care less. Prob why we have lupus,cause we are too sensitive ;-)

Thanks again

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/16/2007 10:32 AM (GMT -7)   
Hi peacesoul--
I know this very well. I worked in computers in great floors of cubes and was considered a star worker even though sick because I actually DID my job instead of gossiping. In my opinion, you could tell these people a thousand times and they would still gossip because they have nothing else in their boring little lives to talk about and are too incompetent to do their job. I was known as being a bit of a b**** but was very professional, I worked with a lot of different clients and managed people, I let no one know I was sick, but probably should have let certain people know, it was my decision good or bad. When people remarked on my obvious illness, redfaced, stiff, shuffling around, not being able to find my desk, I would just say, "Isn't there some work you're supposed to be doing?" In some cases I would soften it with, "If not, you can have some of mine," or if I was leaving, "there is some on my desk." It was cold, yes, but it nipped it in the bud. I didn't care if they thought me the biggest b**** in the world, it was better than that pity, pretend to care and stab you in the back crap that can be going on. This is the way I handled it for a time, until I just couldn't work anymore.

I think it was good of you to get mad. Let them gossip about how grouchy you were and not about your health. If they're mad, maybe they'll do their work for a while and leave you to yours and leave the personal stuff alone.

Another reply I had for people, these are coworkers, not bosses mind you, but just the rest of the sharks in the tank with me, was when they said,"you don't look well, are you ok?" "Thanks alot, way to tell me I look crappy!" Then they feel guilty and it puts it on them. I know i sound rotten but it kept them off my back and off the topic of my illness. Where I worked, if they had any reason to suspect you were ill, they would shift all work away from you and pretty soon start having talks with you about what you can manage, etc. I worked for very very large corporations and there was a lot of politics.

One friend I thought I had, I had told something about my illness (liver at the time) and I was going to be offered a promotion and I was turned down unexpectedly. She had gossiped with everyone. I was so hurt. She had played up how sick I was and really embellished it. She didn't get the promotion either, to her own chagrin, it went to a man who played golf with the boss. So it goes.

I hope the people you work with really do care and are sincerely worried. If not, the above work. My mother's response is always with a smile, "you know, I'd really rather not talk about my health at work." I would probably add, "don't worry, I'll warn you before I keel over." Mom's response is probably the appropriate one.

I'm sorry about this and I hate that stuff. If you have a work mediator or someone in HR, employee advocate or assistance or something, you can talk to them about that, but I steered clear of HR because I worked for them too, and because sometimes it backfires and though they aren't supposed to they go behind your back. You can go there, you just have to be careful. Unless the company will pay for sensitivity training, not much help and could build resentment.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/16/2007 6:53 PM (GMT -7)   
I can't add a lot to what the others have already said. It just stinks that we have to deal with stuff like this and feeling like people don't get it even when you try to explain it. I love your t-shirt idea, by the way. I've been thinking of a few t-shirt ideas of my own lately. Maybe we should all get together and market some:)

I think your co-workers should all get a mass e-mailing of the Spoon Theory, although it still might not get through their thick heads. When I was working there were only two people who really kind of "got it" and understood how debilitating lupus is and that even though I showed up to work everyday, I might feel very sick or be hurting really badly. Other co-workers didn't get it and really didn't seem to care to get it. It amazes me how little the general population knows about lupus. My husband had a physical yesterday and said the nurse noticed his lupus wristband and asked about it. He told the nurse that I have lupus and even the nurse told my hubby that she doesn't know much about it and she's a medical professional.

I'm glad that today was at least a little better for you. Feel free to rant anytime you want to. We lupies need to have an outlet for the frustrations that come along with this disease.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 8/16/2007 8:05 PM (GMT -7)   
Hi, Peacesoul. You have hit on something that really gets to me! People's insensitivity! When people ask me a question to do with my health, I would love to reply, "Do you really want to know or do you just want the usual response?" I usually out of habit just say, "I'm okay, how are you"? Because I know, they don't really want a truthful answer. They don't have time for it. Heck, they're even asking the question while just rushing through something else. If you gave them the real answer, the overwhelming majority wouldn't get it anyway. People are SO disconnected these days. If everything is okay in their little world, it's like their minds can't comprehend a world like ours. Sorry, I don't guess that gives any good ideas for an appropriate response, I just really connected with your words. Please take care and feel free to share here anytime.
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


tink 2
Regular Member


Date Joined Jan 2007
Total Posts : 371
   Posted 8/17/2007 11:30 AM (GMT -7)   
Not a bad idea about the tee shirt you can start your own home based business. I will take a few of them.
Lupus since 2005, MCT since 2005 polymysoitis since 2005,Arthritis since2005 sjogren's syndrome since 2005, vertigo since 2006,migrains since 2006, diabetes since 2006, Depression since 2004. who would not be with all of this.
 
       I just try to make it threw every day as best I can.
        God please remember I am on the diet platter.
                  So many beads so little time.....
 
                   Have a great Lupie Day Denise 


Candii
Regular Member


Date Joined Jan 2007
Total Posts : 135
   Posted 8/18/2007 8:31 PM (GMT -7)   

Peacesoul,

I completely understand everything your going through. I get the same thing sometimes. I hate it when they also say "well you don't look SICK." "you just need to get to bed earlier and you'll feel much better." Oh I wish that was the magic trick. Or this one " you look sunburned....thats good that your getting some sun." And I haven't been out in days. It doesn't matter how you explain it I think there are some ppl in the world that are retarded when it comes to understanding Lupus. I'll take a dozen tshirts please. :-)

Maybe all these ppl can qualify for SSI based on being retarded. LOL Anytime they talk to you just imagine their brains being the size of a pea.

Lots of hug,

kitty


Polycystic Ovarian Syndrome 1992, Restless leg syndrome 1998, SVT tachycardia/Arrythmia '06 (gone after ablation 07), SLE '07, Raynauds '07....Plaquenil,  NorQD, Naproxen, Folic Acid (for mouth/nose sores), Multivitamin, magic mouthwash, Prednisone.


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 8/18/2007 9:47 PM (GMT -7)   
VERY, VERY FUNNY Kitty!

That's it, they are "Lupus Impaired" or "LI" as they would say in Special Ed lingo!

LOL!
Audrey Ann
Diagnosis: Lupus and RA
Medications: Plaquenil (400 mg), RelafenMethotrexate Injections, Folic Acid, Aldactizide for High Blood Pressure, Lipitor for High Cholesterol, Actonel for Osteopenia, and Allegra & Patonel Eye Drops for Allergies.


 


MGeddes
New Member


Date Joined Jul 2007
Total Posts : 18
   Posted 8/20/2007 5:22 PM (GMT -7)   
Hi peacesoul..... I would love to order a few of those shirts myself!!! I work in a small office and people are always asking "Do you feel ok?", "You don't look so good...." They just don't understand. I have also had to use many of my vacation days for medical appts and such.... There is one person in my office that complains that she can never get a day off without be given a list of things that needs to be completed before she can have the day off, yet when I ask for a day off there are no demands placed on me. I responded to her by saying I would gladly take a list of demands and fulfill them to have a day of enjoyment... The last three days that I have taken off I have gone to see doctors and had to have D&C surgery....... gee I wonder why they didn't place a list of demands on me???
SLE diagnosed 2003, Pulmonary Embolism 2002

Plaquenil 200mg 2xday, Coumadin 15.5mg alternating with 17.5 mg per day, Cellcept 500mg 2xday


firebabe
Regular Member


Date Joined Aug 2007
Total Posts : 206
   Posted 8/20/2007 7:29 PM (GMT -7)   
Hi, I'm new here, but I would like you to know that I've experienced people who are just as insensitive as you have described.  For awhile I was actually talking to a phsyciatrist and we came up with some conclusions on how to react to people in this situation.  First of all, we talked about always keeping a smile on our face, not necessarily a genuine one, but kind of a cock eyed one (the scare tactic).  Always use humor when stating your response and laugh afterwards, like the joke is totally on the other person.  If someone asks you whats wrong and you tell them you have Lupus, most people will ask what that is.  At that point, you tell them you have no idea but only really great people get it.  Keep your chin up. 
 
I was only diagnosed in May of this year, but my doctor has been running tests for about 3 years.  I've been through alot of misery and people just don't understand.  They think they are being sympathetic, but they don't know how to react because they can't experience the pain and emotions that you have to on a regular basis. 
 
I do have to say, that your closest friends will look out for you.  I have 3 people at work that if they notice I'm struggling, they will quietly take over for me, because I will refuse help if they ask.  I do appreciate them.  It's people like them that help me cope on a day to day basis.  They do care, and they do want to know what I'm going through everyday.  Hang in there.  What else can you do?
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