I used to say, “Well, you’ve got lupus.” However, that is not what she wants to hear.

She knows she has lupus. She knows as well as I do how lupus works. She knows she has fibromyalgia. She knows she has rheumatoid arthritis. She knows.

I have a hard time with these questions. I know she knows, so the trick is to figure out at that moment, what does she really want? Sometimes, she really does want to know why something is hurting that doesn’t usually hurt. The problem is, of course, that I am not very good at figuring this stuff out.

More often than not, I make the mistake of just giving a straight answer. Your back hurts because you moved furniture, or you’re tired because you didn’t eat anything today other than an apple and some toast. Even worse, I usually add something like, “…even though I told you not to” or “in spite of the fact that I reminded you.” I know… I’m working on it.

Sometimes she just wants to know that things will get better, or that the pain is temporary. I can certainly tell her that, even though I don’t know if it’s true. I don’t know that it’s not true, so I feel like I’m still being truthful.

The real problem for me is that I want to be able to give her an answer, you know? I want to be able to explain what is really happening, because that is the kind of answer I would want. But my wife is not like me. I am all wires and numbers and she is made up almost entirely of emotions and intuition. My very factual answers do little to make her feel better. Instead of reminding her about how connective tissue disorders work, I sometimes think it would make her feel better if I said, “Well, it’s a full moon… that’s why.”

It’s like she’s trying to beat her illness in a sprint. The real problem with this is that she never wins this race, because the race never ends. Her illness never stops. Lupus doesn’t suddenly give up and say, “Okay, you win.”

What happens more often than not is that she will continue until she ends up getting so sick that she has to spend time in bed (if we’re lucky) and the hospital (if we’re not).

I think she needs to spread things out a bit more so that she’s not so worn down. She’s pretty sick right now, and I still have to argue with her to rest.

Does anyone else have this experience?

Between the altitude, the bad air quality, and the amount of sun, my wife had a really hard time on the trip. I don’t think I dealt with it very well, either. I try and stay positive, but I don’t think I did a very good job on this trip. It’s so frustrating to see someone you love be miserable.

We were at the lake, and I was out in the very very cold water while the kids were playing on the beach, and Jenny had to stay covered up in the quickly fading shade. I knew she would much rather be out in the lake, and it just made me sad to see her all alone with her big hat, reading a book. She shouldn’t really have been out there at all, but she knew how much it meant to the kids to go to the beach. I just don’t know what to say in times like that, and so I don’t say anything.

Honey, I’m so sorry that you have a really stupid disease.

I can’t tell you how many times I’ve said that to her. I don’t know what else to say.

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?

I’m lucky to have a position now that allows me to be somewhat flexible with sick days. I would say that 9 out of 10 sick days in the last couple of years have been to care for my wife. I usually just go to work sick.

I know one of the things I need to do to keep my sanity is to develop a strong network of support. However, I have a few roadblocks I have to get past before I can do this.

• I have no extended family. My parents, grandparents, aunts, uncles, and so on have passed away. I am an island.
• Up until recently, my wife did everything she could to hide her illness from friends, and to some extent, her family. The idea that lupus is a serious illness has not really settled in yet.
• All of our current friends also have small children, and it’s difficult for them to help sometimes.

The last few days have been particularly bad for me. I find myself becoming angrier and more resentful as time goes by, and yet there is no relief in sight.

I think what I need to do is start with the positive.

• I DO have a few people that I know I can count on for anything, and I can be thankful for them.
• Often, I don’t have any help, BECAUSE I DON’T ASK FOR IT. I shouldn’t feel ashamed to ask for help.
• Things will not always be like this.

Any ideas?