Holding down a job while suffering from Lupus can definitely be a trial.
I personally have been blessed with a great job with a great company that understands my needs. When I started working there, I was only a part-time employee. One of the really positive things about working for this company is the fact that they offer full benefits to part time employees. You can either choose the basic benefits package or the “fully loaded” one. I have the fully loaded benefits package. It helps me pay for medical stuff, including my meds, physiotherapy, massage therapy, etc.
I would definitely consider myself to be one of the “lucky ones”. But how do people who aren’t as fortunate as me where my job is concerned cope?
Lupus isn’t really a disease whereby you can look at someone and think “yup, definitely, that person has lupus”. This can sometimes make it hard when you’re trying to explain to your employer that you simply couldn’t come to work because you were “too tired”, or your joints were hurting, etc.
When you apply for a job, and if you get to the interview process, do you disclose to the interviewer that you have a chronic illness? Do you save such information until AFTER you’re hired?
What if you are diagnosed with Lupus AFTER you’ve been working at a certain place? Are you honest and tell your boss? Do you discuss your limitations and any possible accomodations you might need?
My job has accomodated me greatly. Right now, I work only a few hours a week. I have a special ergonomic chair that was given to me when I asked for it too. I’m also able to get up from my desk whenever I need to in order to take a break/breather.
I’d be interested in knowing other people’s opinions/experiences with holding down a job/career while dealing with Lupus!
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hi there!! first of all i'd like to salute you for your courage. Just like you, lupus struck me when i least expected it. I had just passed my nursing boards at the age of 22 (like you, i was on top of the world) and a week later i got so weak and swollen i went to the ER and 10 days later i was diagnosed with lupus nephritis. I was lucky enough to be working at a company that understood my needs as well. They even promoted me as supervising nurse for the company regardless of my condition. I did explain to them the situation and my limitations. They were nice enough to understand. But like you said it is difficult to hold down a job while having lupus. There are just days that come where you can't function. And since our disease is the "you don't look sick" disease it's hard! some people around me are just thinking I'm taking advantage of the illness to get time off.
I'm so happy i found this blog..someone i can relate to. sometimes i feel like i'm so alone and no one understands what i'm going through...God Bless!
Hello there,
I too can relate to your situation. I am 22 about to turn 23 this summer. I found out last year that I had Lupus. It was a few weeks after I had turned 21, I was starting my Senior year in college and all the sudden I began to get very sick, very quickly. I went for months without knowing what was wrong with me and come to find out 8 months after all the pain and swelling, weight loss, no appetite etc., I was diagnosed with Lupus.
My family and I found this to be very strange because I had just got done a month before with my last vaccine of Gardasil (the Hpv shot) and I am not sure if anyone has read up on it, but there have been many issues with this drug and girls having all types of strange reactions. So I am quite convinced that it may be drug induced, at least I pray everyday that it is!
As far as having Lupus in the workplace it is a very difficult thing to deal with. I work as a Graduate Assistant currently in the Undergad Admissions Office at the Univeristy where I just graduated with my BS. Now they are paying for me to get my Masters along with giving me a paycheck every two weeks. Not a bad gig. The tough part is working 8-5 everyday M-F.
It is rough and I have already had to take a lot of sick days. When they hired me I did discuss this information with them. But I think anyone that really doesn't have to live with this disease everyday doesn't get it. There are days when I can feel my body telling me your really pushing it you need to go home and rest. How do I do that without feeling guilty? It sucks because the people I work with I feel look at me as though I am a slacker and just wanting time off. They don't really understand that somedays you can't just stick it out. What people don't realize is if I don't take that half day or day off to give myself more time to rest...I could be out for a few days opposed to a half day. It's so difficult when I do have to take time off because I just feel so crappy and on top of that I can't really relax like I need to because I am worried about what people at work are saying.