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ruziska
08-10-2011, 02:23 PM
Us are the lupies and everyone else who lives with autoimmune diseases. Them is those who don't. Us understands, them don't.

Prime example: as you know from the my post yesterday, the "great" job I thought I had lasted exactly ONE day. Today I was discussing it with the recruiter from the temp agency that got me the position. I told her from the beginning that I have lupus and have been very open about it. One of the problems I had yesterday was the florescent lights. I think being in the basement of the building with absolutely not a sliver of natural light and the construction of the building led to a higher concentration of florescent light. I could be wrong as I'm not an expert on florescent lighting, but it would make sense. Anyhow I was telling the gal about how almost overwhelming fatigued the lights made me which led me to realize that a job there would not be a good long term idea. Well this gal goes off on me and tells me that I should have told her about my issues with florescent lighting and even though legally I didn't have to tell her I have lupus in the first place but since I did I should have told her about the lighting blah blah blah. I TRIED to explain to her that each case is different. That some places the florescent lights don't bother me at all and at others they drive me crazy and I can't see into the future and know which will and which won't but she just did not get it. I told her that it was a great learning experience for me because I now know working in a basement under florescent lighting is a very bad idea. She continued her tirade that I will now have a difficult time finding a job because all businesses use florescent lighting. No duh. However with an above ground job, there'll be some natural light coming in (we don't have many buildings around here that don't have windows to the real world) that I'm not going to let florescent lighting issues stop me from working that lupus isn't going to win that war that I'm more than capable of handling the issue. She just doesn't get it. She kept going back to "you should have told me". I told her that I'm not psychic for if I was I sure as hell wouldn't be having that conversation with her because I sure wouldn't be living in the situation I'm living in. Hello winning lottery numbers! I also suggested that as a recruiter, it would be in her best interest to become informed about issues that are affecting her clients as in having a lupie for a client, become informed about lupus. If she had a client with cerebral palsy, she should learn a bit about that so that she can best help her client find the best position for them. Yeah, right, that would take understanding and work on her part.

Us are educated and understanding. Them are just plain OUT THERE

Gizmo
08-10-2011, 03:45 PM
Unfortunately Us have to live in Them's world, so the trick is to figure out when and how to share information with Them. I guess my take on this is that you are in a tricky situation being a temp. Companies are very sensitive to being cited for ADA violations, so I can sort of understand the recruiter's reaction. Fluorescent lighting IS EVERYWHERE (as we all know). That must have blindsided her - like someone wanting office work and then saying they are allergic to paperclips. For a permanent job, you maybe can work around the paperclip allergy, but for a temp - how do you do that? Especially if you are maybe going on to a new job every week or two.

If I were in your shoes, I would think about what I really wanted from the recruiter. If she reads up on lupus do you think it will make a difference in her ability to find you the right job? If so, what would she specifically need to look for when she places you? Since the photosensitive cat is already out of the lupus bag, maybe you can help her out by outlining what kinds of lighting would be OK for you. It sounds like you both got defensive, and maybe the conversation wandered out of the "professional zone"?

I am currently looking for work and I have gone through various scenarios in my head about how to handle the lighting issue, so I understand the quandary - to tell up front or to wait and see if I have a problem. For me, if the tubes are in a plastic case, there is no problem. You can also buy inexpensive UV coated vinyl tubes made to just wrap around the bare fluorescent bulbs. You could take them with you from job to job and at least cover the lighting in your area. Here is the link for one company: http://www.northsolarscreen.com/html/fluorescent.shtml

If I were in your shoes, I would find a way to make nice with the recruiter (because you need her on your side) and then be as specific as you can be about what accommodations you need. Other than the light covers, is there anything you can do to help? Does wearing a hat, sunscreen and long sleeves make a difference for you? I hope you are able to salvage this situation and find a great permanent position eventually. Best of luck!

ruziska
08-10-2011, 07:16 PM
UPDATE:

The recruiter called me 4 hours later. Total opposite mood. She had talked to her boss who basically ordered her to call me and make nice. She apologized profusely for the way she talked to me and I graciously accepted.

What I was trying to get through to her in the first place is that I know florescent lights will be a part of my life and give me various levels of grief but I am learning how deal with them. I wanted her to know that the intensity of those florescent lights was just the icing on the cake of a bad situation that I preferred to not be a part of. I suspect her boss spelled it out for her. Whatever the reason, her boss made it perfectly clear that he considers me to be highly employable and is working (with this lousy economy) to find a good position for me.

Gizmo: I will definitely check out the uv light covering link- thanks!

tgal
08-10-2011, 07:31 PM
Glad things turned around for you!

magistramarla
08-10-2011, 07:46 PM
Rita,
Back when I told my principal about my AI issues (I wasn't worried about my job - Jeff was already applying to head out to Ca), she asked me what kind of weed I had been doing back in the '70s. Most healthy people really have no idea what we are dealing with at all.
I was very outspoken about it at the school, and soon learned that one of the English teachers also had Lupus. Before the end of the school year, she and I were both mentoring a couple of girls who were going through the diagnosis stage. I also had one young boy as a student who was suffering from Avascular Necrosis of the jaw. When he found out that I had it in my knee, we formed a bond, and that boy badly needed someone to understand him.
Good for you that you were upfront with that recruiter. I'm glad that her boss told her to be more understanding. That's all we can do - teach one person at a time about what we are dealing with. I hope that she does some research and becomes more compassionate.
Hugs,
Marla

steve.b
08-11-2011, 05:28 AM
the last two jobs i had, were both after my diagnosis.

i was upfront with both of them.

i was also careful not to over or under state my abilities or problems.

it is a fine line. but one worth treading.

best of luck.

lovedbyHim
08-11-2011, 05:45 AM
In PA we have OVR. Office of vocational rehabilitation. They help people find jobs that work around disabilities. Do you have anything like this in your state?