Many people with lupus are too ill to work. But that is not always the outcome. Depending on a number of different factors some people with lupus are able to continue working.
In my opinion, which is seldom humble, young people who have been recently diagnosed should be encouraged toward the fulfillment of their dreams. This article appeared in Lupus Now magazine last year. Even at my advanced age, I found it inspirational.
I have been very fortunate to have been blessed with a boss who understands the disease and that when things are under control, I can be very productive. But I think those two factors make all the difference. If I had any of the other profs in my dept, I would not have been nearly as successful as I have been. Once I have my Master’s degree, I will have to be very selective in regards to my next position. It’s a sham that our society still focuses on quantity over quality in the workplace.
I too have been blessed with a great boss who understands my problems and only schedules me 3 days and 4 hours a day. I walk the floor and sell baby gear and am one of the best in customer service also. Before I was diagnosed with Lupus I was able to work 8 hours and now with the disease I can only work 4 and get very tired when I get home. I plan on working until Lupus takes over my body that's when I will no longer will work.
I too was very well supported by my manager and company, while my symptoms were reasonable to the powers that be, including missing a lot of days. I worked for 10 years after my diagnosis. Sometimes, to make it through the week, I had to spend an entire weekend sleeping most of the time.
However, when I became extremely ill with lack of circulation to my femurs and had to undergo 4 surgeries for a hip replacement, the story changed and the 90 day family act leave (thank you xPres Clinton) was applied and out the door I went.
Inspiration is great until something extremely serious happens and the company has no use for you any more. For those of us who don't make it on inspiration, doesn't mean we don't keep trying. Some things are easier and some not. As are all things in life.
It all depends if you're physically and psychologically up to the challenge. I would hate to set the gold standard on someone else's story, because we are all different and have different mountains to climb.
I bristle with the Pollyanna stuff. I like all the stories, not one over the other. People who can't be successful in the workplace are still succeeding in their life and are inspired.
I will continue to work as long as I can, I am now retired and on disability, but love working with the public even when I feel bad when I wake up. I feel like they are waiting for my customer service to help them so I get dressed and go to work.
I try my best, and while I am helping them, I say I cant lift anything heavy because I have Lupus. At that time they ask me about Lupus. But they always come back to me.
I remember that article it is very positive! I could not work and do college so I was not able to follow my real dream of becoming a Vet or Naturalist/biologist. BUT, it worked out where I was able to have great job that continuously got to keep learning, be creative but also get to use computers so i stayed up on latest programs etc.
I was lucky to have great bosses though it did take me getting sick one day at work...work Doctor wanted me to go to hospital and I was like...this is my life, calm down. No one after that day even doubted how sick I was again. lol! I also tried my best to not let my illness get in the way as much as possible.
I was lucky also that my first rheum doctor told me to try my best to keep working as long as i could that he saw it actually helped most people to do better and be happier. I do believe he was completely right....after i did leave my job due to health reasons my self esteem did drop. I miss the people and ability to be able to take care of myself financially...but on the other hand since i was a lot more sicker i liked being able to rest and it allowed my husband and I to go hiking on his days off since i could rest on the other days! So we had some wonderful times after i stopped working....only reason talking in past is his ankles are wrecked now so hiking is very hard ..just walking is hard on him but we still walk our dogs out in woods daily.
I really think people need to try and stay working as long as possible just for themselves...and i hope that people find jobs that they enjoy..that makes a huge difference too!