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Posted 2/10/2010 8:10 PM (GMT 0)
I'm 22 and was diagnosed a little over a year ago. In December, I started a new job, which I really like, and it is full-time, 40 hours a week. My boss does not know I have lupus, but notices I get tired easily (usually about 6 hours into my day.) I'm up for promotion next month, but it will mean working 45-50 hours a week. I honestly am not sure I'll be able to do that.

Are there people with active lupus who work full-time regular jobs (as in, not from home or flex hours)? Is it even possible? And what are your thoughts on telling the boss? Do I tell him or keep it to myself?

40 hours is doable for me right now, but it leaves me very little time to do anything else, because of how much sleep I need to get. The rest of my life has all but stopped- hanging with friends, doing anything fun, anything else really.

Thoughts? Suggestions?
Posted 2/10/2010 9:17 PM (GMT 0)
Hi,
I've had Lupus since I was 19 years old. I was able to continue to work full-time until I was 40 yrs old. I did work more than 40 hrs a week and rotating shifts, However, it took every bit of strength and energy I could muster.

My supervisor was aware of my condition. It will be your decision to let your supervisor know. Do you think she/he will be willing to work with you and not against you?

I hope this works out for you. Please take care and try to pace yourself. Keep us updated. You will be in my thoughts and prayers.

Babs
Posted 2/10/2010 9:31 PM (GMT 0)
I am in the same boat...well sorta...I am 23 and newly diagnosed and am currently going to school full time and have 2 young children. There are many days I wake up and wonder if I am putting all this effort into school for nothing. Everyone I talk to encourages me to continue with school but same days I more discouraged than others. I just try to take one day at a time and see what I am left with at the end of the day. So I don't know if there is any advice I could give to you right now just know you aren't the only one struggling and anytime you need someone to talk to I'm and everyone on here is here for you!
Posted 2/10/2010 9:40 PM (GMT 0)
I would definately not take the promotion if I were you, you may have to explain why if you end up turning it down but it is better to keep the job you can do even if it is all you can do to do it than to get a promotion and suddenly be unable to do your job. I have no idea what to tell you about telling your boss, it is a touchy area because supposedly they can't discriminate but some will (sometimes without realizing it). You boss has already noticed something is up though so a quick discussion might be in order so that he/she doesn't think you are partying at the expense of your job- sometimes they assume the worst about you when they don't know what is really happening. I am unable to work but I have more than just lupus going on and my health has always been delicate.
Posted 2/10/2010 9:45 PM (GMT 0)
Hi there! Welcome to HW :)! I am 22 and have had to cut back on my hours BUT only because I am doing Cytoxan for my kidneys and it wears me out plus about 2 weeks after the chemo, my WBC falls below 3 so I am on house arrest and work from home for that week. My rhuemy has suggested I go on short term disablity but I don't want to do that unless I can't go on. Before the chemo I worked 40-45 hrs a week with out much problem minus joint pain and fatigue. Which I would take a power nap at lunch and that would help a little with the fatigue. I would be 100 percent honest with your boss. That way if you are having a "slow" day, your boss will know why and not chalk it up to you not caring or becoming lazy. When I told my boss about it, things became so much better for me.

I hear ya on the thing about not being able to do much! That is the one thing I hate most about this disease, how much it limits you! Anyways, I better get off my soap box because I could talk and talk about this.

I would say if you pushing to get work done at 40hrs, it might be a good idea to wait until the next promotion comes up!
Posted 2/11/2010 12:25 AM (GMT 0)
Hello! You have received excellent advice from everyone. A couple of things to add, for me personally, I could not do a 40 hour work week unless I could do some of it at home. That way I work longer on some days and shorter on others. Is that an option for you? Also, I hate to bring up a bad subject but what about health insurance? Does the number of hours you work matter when it comes to coverage?
I hope you feel better and wish you luck.
Posted 2/11/2010 1:57 AM (GMT 0)
HI, welcome to the forum. Everyone has given you great advise, I just wanted to pop in welcome you! As you can see the people here are very supportive, so feel free to lean on us and vent when you need to.

I also work a full time job. I was dx in 2005 and at that time worked 40hrs a week and it took A LOT out of me. I would spend my weekends in bed recovering. A couple of years later my hours were cut to 4 days a week which worked out great! Then this past June I was bumped up to 35 which threw me into a terrible flare and just recently I requested I go back to 4 days a week. It helps a lot but I am in another flare :(

I was honest with my boss up front but I work with very understanding women so that helps ;) I do think being up front and honest is the best thing especially when we're dealing with a disease like lupus.

Take care, I hope you like it here.
Posted 2/11/2010 2:34 AM (GMT 0)
I've found it's good to tell the boss, but make sure it's presented in a matter-of-fact kind of way. I mean, make sure you don't come across as a whiner or a slacker. Saying that you sometimes have difficulty with the demands of the job is fine, but make sure to offer ways in which you could be helped to be more efficient, or talk briefly about the treatment and what you expect the future to look like.

Or you could simply ask not to be put up for promotion, just vaguely saying you have some health issues that prevent you from being able to work more hours. You may or may not choose to use the word "lupus", but in all cases I wouldn't go into a lot of detail. When I had to do this I focused on my fatigue and my need to schedule things a little differently so that I could support good health -- like making sure I took time for lunch, but demonstrating that I worked a little earlier &/or a little later to make up for it -- that kind of thing.

Hopefully you will be able to control your lupus soon and put some of these questions behind you. I worked a long time past when I should have stopped by pacing myself, but I know that isn't always an option.

Be well,
Posted 2/12/2010 12:33 AM (GMT 0)
Welcome to our forum. I'm sorry you have to deal with this at such a young age. There are many who have lupus and work for years, but it sounds like you're already having to spend all your free time crashed. I worked a very high profile job and was very sick for 2 years before being diagnosed in 2005. I'm now 52 and permanently disabled. I went downhill fast, but I think I'm the lupus exception. While working and sick, at lunch time I took an alarm clock out to my car put the seat back and power napped with pillow and blankie. Once my co-workers knew I was sick, on very bad days I unfolded my small sleep mat and blankie under my desk with said alarm clock. Of course my ears burned the entire nap :D I sure hope things work out for you! Love, Butterflake
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