Coping at work

Fortunately, I work with a great group of people and a very understanding supervisor. To him family, personal health & well-being come first...I know...a very rare quality in this day and age.

Anyway, we moved from our current cubical location on one side of the building to another area. I was by a window....nicely tinted to keep out UV rays and not directly under flourescent lighting. It was perfect! Now I am directly under flourescent lighting again, although my supervisor did the best he could to keep me away from it. I am already feeling the affects: itchy skin, redness, joint pain, swollen glands, brain fog...you know the list!

So I had to fill out a "Reasonable Accomadations" request so that Human Resources can get a protective coverings for the light right above me. I feel like a freak telling people I am photosensitive and allergic to flourescent & sun light. I explained to the new HR person and she said "Oh, don't worry. I understand. My sister has SLE." Wow! It was so nice not having to explain how allergic I am to everything, including myself.

Hugs,
Beth

Beth
This sounds like you have a great place and people to work with.

Take care
Ray

Hi Beth,

That's wonderful not having to fight for your accommodations. What a great place to work and what are the odds of meeting someone who knows about lupus. You lucked out all around! Good for you!!

YAY Beth, what a sigh of relief!!

Monica

Hi Beth... that's fantastic!

I'm sure it's all about awareness as no-one really knows what bloody lupus is, especially here Down Under.

A few years ago for World Lupus Month, I placed a poster on the wall at work. The few clients and customers who knew of lupus said, "Who's got Lupus?" and others unaware asked what it was all about. It was my first small step for awareness and the rest followed.

I know it's difficult as I'm still reluctant to shout-out-loud about lupus in the workplace as it's so rarely understood - like explaining why I flee from all the fake lights on my breaks and don't mingle in the staff room to catch up on the gossip!

A way around the issue for others, and to make those aware of what you are going through, or could potentially be a problem, could be helpful:

In the past I've had a quiet word with the boss that matters - the big one - and asked if he or she had internet access.

(obviously yes!)

I've then told them to check out The LFA's website or The Alliance for Lupus Reseach site - (these days it would probably be my blog).

(the question was usually, "Why?")

"Because I've got a form of lupus and I'm still performing at work equal to, or if not, better than others."

That way, your condition is known to the big boss in confidence, he or she can research the complications in advance and understand what you're likely to go through - and more importantly you're educating someone supposedly superior. But like I said, it's private and in confidence with your most senior manager/boss.

I think the whole issue revolves around a calm and quiet chat with your big boss rather than letting others or middle management passing ill-informed 'Chinese whispers' up the ladder without understanding.

I know all workplaces are different, and situations differ, but this approach has just helped in the past.

Geoff...