Taking Time Off From Work
Recently, there was a comment left that I thought deserved a post of its own.
My wife has Lupus as well, she has had it since she was a child. So far it hasn’t been to bad, but since we got married 2 years ago, she has been having a sever pain in her side on the back above her kidney. So far no tests have shown anything, she is constantly in pain and on high levels of pain medicine. I am wondering if you could offer some advice to me on how you manage a job and caring for a sick spouse, if it is even an issue for you? My wife often asks me to come home early or take days off when she wakes up feeling unwell. My employers have been understanding, but they are starting to question how much time I am taking off. – Dave
I have had similar experiences at work. They are very understanding and I don’t have to do it too often, but they do question the time I take off.
I think that it’s good advice to be up front with your work about your wife’s illness. That’s made the difference for me. It can be confusing if people don’t understand that lupus isn’t necessarily an illness that affects someone the same way each day. There are good days and bad days. Seriously, most of the time Jenny doesn’t need help like that. She’s in a lot of pain, but she has a career and she makes it through her day as best she can, trying to stay ahead of the pain with medication. I don’t usually need to miss work. I choose to drive down with her to UCLA because I know that’s a rough drive for her and I like to hear what her rheumatologist has to say. She’s a great doctor and really goes out of her way for Jenny, so I try and schedule my vacation days around those visits.
When I do miss work, it’s usually because she’s so bad that she can’t get out of bed or I have to take her to the hospital. Unfortunately, that happens more often than we would like, but we do the best we can. Jenny’s sisters help out a lot, and we have some great friends who help as well.
You also need to keep your wife up to date on situations at work. I really suck at this. I just usually don’t want to talk about work when I get home, but if I don’t then my wife has no way of knowing why I’m stressed out or if I’m having to deal with situations caused by me taking time off.
Here’s my advice for dealing with the issue of time away from work:
- Make your boss aware of the situation and always try and make contact with them in times of trouble. That way, they will be more likely to be sympathetic to your situation.
- Get help from friends and family and make sure you have someone to call in case you need some emergency help.
- Make sure that you and your wife keep your lines of communication open so that you will know when you really need to stay home, and so that your wife knows that it isn’t always an easy situation to take time off from work.
Does anyone else have any suggestions?
Jeff,
I appreciate you putting this post up for me. This issue has become a huge straining point on my life and marriage since I recently was promoted. It is difficult to manage the two, especially during a flare when my wife is unable to take care of herself. I have managed to change my hours so that I come to work earlier, while she is asleep, so that I can be home earlier in the day. The next step is to find ways to work at home whenever I need to.
Thank you so much for sharing your story. Please visit my website & help spread lupus awareness http://www.piqualupusawareness.com
reading your entries reminds me of the time my husband (then boyfriend) have gone through because of my lupus. its a good thing he is a field engineer so he can squeezed some time off to take care of me when i am in the hospital. we belong to the same company so his boss and my boss understands our situation and they are very supportive of us.
now, my husband is in kuwait working. i am now a stay at home mom to a daughter who is turning two this july. i am on remission for three years now but i still have monthly checkup and taking pred for maintenance, although my pred is low dose and we are working for me to be pred free.
may god bless you and your wife. keep the faith.
btw, do you mind if i put you up a link of your blog in my blog ? thanks
I was just diagnosed in Nov./08 with lupus. I feel like a burden on my husband kids and family. I don’t feel like anyone gets it. I am a professional who is working partime. I’ve recently taken a short sick leave to understand all of what’s going on with my physical health and mental health. I am afraid of what the future has instore. I don’t know alot about lupus. All I know is that everyday is different with regards to how I’m feeling. I was started on meds that don’t agree with me but try to be strong and take them faithfully. I feel that at times I do have support from my spouse but if we are quarelling he throws comments out about my situation that I interpret as I AM A BURDEN!!!! I have two young children and am frustrated that they have to see me irritable somedays, crying others or perfectly fine other days. I feel an overwhelming sence of guilt because I can’t always get things done around the house as I would like. I am a frustrated that my husband doesn’ always keep the lines of communication open regarding his feelings or stresses at work or at home. He says he doesn’t tell me because I CAN’T HANDLE IT! How does he know what I can handle or not. I feel this isn’t fair of him to do. I’m not dying I’m just going through a disease process that will take time for me to understand. His keeping things from me hurts more than if he’d just talk to me like his equal, his friend, his spouse. Tell me what I can do to help my situation and get through the difficult times. Thanks.