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.”

The Lupus Foundation of America has quite a few suggestions on what you can do to help spread awareness, including sending an informative eCard to friends and folks that may not know about lupus.

They also have a number of ads that can be placed in newpapers or magazines, or online like the one below.

Even if you don’t have a blog or have the extra cash lying around to place ads in newspapers and magazines, you can still help spread the word about lupus by just mentioning it to someone at work, or while you’re waiting in line at the store. Sure, you might think that they don’t care or aren’t interested, but you never know. Give people a chance. They may surprise you.

For my own part, I’m going to send out some of those eCards, print out a couple of informational fliers for my office, and make sure that I have joined The Lupus Foundation of America’s cause on FaceBook.

For the first poll, I wanted to get some feedback on a subject that comes up often in Lupus discussion groups, and is something I’ve dealt with recently. Lupus and the pain-in-the-butt suite of illnesses, syndromes, and phenomenons that usually go along with lupus are not always easily seen. Most of the problems that my wife has are fairly invisible. This latest problem with her hands was certainly an exception, but usually, other than skin reactions related to her photo-sensitivity, Jenny doesn’t usually look sick.

The only problem with not looking sick is that many people who are not familiar with lupus or other potentially invisible illnesses will often have trouble taking the illness seriously.

I’m just curious how many of you out there with lupus, or whose loved one has lupus, have symptoms related to your lupus that are easily visible and how many have a somewhat invisible illness.

You are still free to make comments as well. I do appreciate them. Also, if you do happen to see an advertisement that interests you, please click it and check it out. It doesn’t cost you anything to do so, and the few pennies I receive do add up and help a lot when my web hosting bills come due.

I know that this is the main reason my wife doesn’t actively participate in many online lupus groups, or offline lupus groups for that matter. Most of the time she would just rather not be reminded that she has lupus. Yes, she has to take a huge amount of medication each day and she certainly feels the effects of her illness, but for the most part, she would rather not talk about the illness itself. She will talk about the pain or other symptoms, but not about actually having lupus.

I have a type of mild chronic depression, called dysthymia, that I have dealt with since I was very young. I am aware that I should take some kind of medication for this, but I choose not to do so because I don’t like the side effects. There are some things that help a great deal, like regular exercise and adequate sleep, but I don’t always stay on top of those activities either. Usually, I just don’t want to think about it. I should be involved in some kind of discussion or support group with other folks dealing with this type of depression, but I am not. I would rather spend my time involved in activities that get my mind off of my depression; however, by doing this, I deny myself the opportunity to actively work toward dealing with my illness.

Is this just a form of denial or is it a necessary strategy for gaining perspective? Can we become so involved in a situation that we lose that ability to think outside of our own sphere of influence or concern?

I realize that we are lucky to be in a place where this is even possible. Five months ago, when Jenny was in the hospital, it wasn’t possible to ignore the reality of her illness, or mine for that matter. Now that things are going better, it becomes possible to make believe that everything is great and that we can get through a day without illness or depression. However, the reality of that just doesn’t hold up, and often makes the impact of a particular crisis even more difficult to accept.

Obviously, there needs to be some sort of balance between a pro-active involvement in the control of your illness and a healthy detachment from the situation so that a sense of perspective can be maintained. How that balance is achieved is another matter.

There’s no perfect thing to say when your loved one is having a bad day, and nothing is wrong with admitting, “I don’t know what to say.” You don’t have to say anything, as long as you listen to her and let her know it’s OK if she wants to vent.

What if the sick person isn’t taking medicine on time, is eating poorly or is otherwise not taking care of himself? That’s a tough one, says Jay, and what you do depends on your relationship. Talk to his caregiver or a close family member first. You could gently broach the topic with your friend, but be aware that he may become angry.

What if you are the caregiver or close family member?

I have struggled with this for years. It’s very hard to know what say. My wife is in pain all the time to some degree, but when she talks about that pain, she may need me to react in a number of ways. I can:

• just listen and let her vent
• be sympathetic and talk about how lupus sucks
• be optimistic and encouraging
• give her a verbal kick in the pants if she needs to be more proactive

I can tell you, and so can my wife, that I don’t always make the best choice. I do try my best, but it’s hard to see someone you love be in pain.