This site isn’t just about lupus. It’s about how lupus affects not only the person with lupus, but also all the people that care about them. For as much as I would like it to be different, my wife’s lupus impacts my family more than any other factor in our lives. It is the single most discussed topic. It has an effect on what we do each and every day. I’ve gotten so used to it, that I don’t think about it anymore.

I mean it. I don’t think I think about Jenny’s lupus like I did a few years ago. It’s like living in a house next to a train track. At first, the noise keeps you awake at night and drives you crazy, but after a while, you just sleep right through the noise. Well, I think I’ve been sleeping through my wife’s illness for some time now. I haven’t read anything about lupus lately. I’m certainly not on top of what’s going on in lupus research. I’ve just gotten used to how things are. I stay on top of her medicine. I try and keep her from overtaxing herself. I try and reduce some of the daily stress and make sure she gets enough rest, but it’s all so automatic anymore.

I am going to start thinking about lupus again. The train is still out there and I’m not planning on moving to another house. I love my wife so damn much. She’s beautiful, smart, stubborn, and always full of surprises. She’s my best friend and a great mom, but she’s got this stupid illness that weighs on her daily, like ghostly shackles that come and go at their whim. Some days are okay. Some days suck. I’m a reasonably intelligent person. I should be able to figure this out. I should be able to make this all work better. I know there are other people out there doing the same thing. Why not share our ideas, our successes, our fabulous failures, and our daily struggles?

Now I just have to figure out how to do that every Thursday.

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?

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 usually manage to avoid it or I get it to a lesser degree. I’ve written about what we do to keep each other from Catching a Cold. Right now, Jenny is on antibiotics and I imagine the kids will be on them soon. I seem to be doing okay.

I usually just try and drink more water and wash my hands a lot. I also take a multi-vitamin, which I don’t do on a regular basis. I have no idea if that actually helps, but I figure it can’t hurt.

There are times when I just can’t do everything. My wife is still having some flu symptoms and is having a hard time. I had to take a day off of work at a very bad time for me. This is really the busiest time of the year for me, and I don’t mean this time in general, I mean last week and this coming week specifically is the most stressful and busiest time of the year for me.

We will get through it and everything will be fine; however, I have put some posts on hold until I can have some time to sit down and write again.

I did my best to keep her from getting dehydrated, using ice chips before moving on to water. She seems to be feeling a little better, but now she has a whole day where she’s missed most of her medication.

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.

One one hand, I’m glad that she’s able to get rest and has people taking care of her, but on the other hand, lupus is really confusing and few medical professionals really know much about it.

We’ve never had to deal with a prolonged hospital stay before. I’m getting some help with the kids, but I want to be there for them as well, which leaves my wife alone at the hospital. She hates being alone, and I feel bad that I can’t be there all the time.

I’m not sure this post had much of a point, but I’m sure I’m not the only person out there dealing with something like this. Send some good thoughts our way, if you can.

• Lupus is a basic threat to the wholeness of the human being.
• Medical treatment requires the patient to trust strangers.
• The patient often suffers separation anxiety.
• The patient fears the loss of love and approval from friends and family.
• The patient may feel a sense of guilt and fear of punishment.
• Lupus causes a great deal of chronic and intermittent pain and fatigue.
• Lupus causes feelings of uncertainty about the future.

Dr. Schostal then discusses the kinds of reactions that he and other physicians has observed in friends and family members of the lupus patient. He has these suggestions for friends and family dealing with lupus.

First of all, lupus is a family problem and needs to be viewed as such. This requires that other adult family members and even children understand as much as possible about the disease. Regular contacts with the physician might be one route that one takes. The family member cannot share the disease itself or understand it exactly in the same way as the patient, but such understanding and sharing the consequences of the disease must be maximized.

My wife and I have had many discussions about this very topic. For many years, my wife tried to hide or downplay her lupus, even to her parents and siblings. She has gotten better at talking about her illness with friends and loved ones, but we still have a hard time discussing the situation with our children. We do our best, but with an eight year-old and a three year-old, it’s a difficult topic to talk about.

Secondly, and I will underline this, there is not single healthy response to lupus and a lupus flare-up. The trick is to find the best response at a particular time — sympathy when the symtomatology is at its worst; support during times of fear and crisis; a kick in the behind during the times of patient’s self-pity. I suppose healthy responses are those that fit the situation. Psychiatrists are relatively immoral people. I frequently tell my patients when they ask, “Well, what ought I to do?” or, “What should I do? What’s right, what’s wrong?” that these are determined not by any system of things that is written down. There are no “Ten Commandments” — but rather by what works for them and what works for their families, and the hard part is figuring that out.

No kidding it’s hard to figure out. It’s almost impossible when you include the fact that the friend or family member is also effected emotionally by the lupus patient’s illness. I do my best to anticipate the best response for a particular situation, but sometimes I feel so frustrated and helpless that it all comes across as something other than I intend.

Thirdly, and most important, is open lines of communication. The patient needs to feel comfortable telling other family members how they feel, what is wrong at a given time, and what they think might be helpful or what the family might be doing that is not so helpful … I cannot stress enough that the family also has to be willing to talk to the involved person about the same issues; how they feel, and what the person is doing that is bothering them, or what about the person you know is helpful for the family in dealing with the disease. It’s relatively easy, for example, for a patient to say, “Thanks, you’re all so good to me,” but there are times that the patient has to express the less positive feelings like, “It makes me angry every time I talk about how I feel, you change the subject.” For the family member, it’s relatively easy to say, “I feel awful watching you when you’re sick.” It’s much harder but perhaps even more important to be able to say, “This time I find myself angry with you for being sick and looking depressed, and I don’t even understand why,” or “Is it really that bad? Just last week you were doing fine, and this time you’re really getting to me.” The disease, for heaven’s sake, is a family problem and, as such, much easier to deal with given open lines of communication.

Lupus is so hard to understand, and that makes it even more difficult to discuss. I know for myself it really comes down to fear. My wife’s lupus is severe and life-threatening, but it may continue to be controlled with medication. We just don’t know what’s going to happen, other than that it will continue to be a problem that we deal with every day.

I hope that this site will allow some individuals, patients or loved ones, to discuss their feelings and frustrations, and to share what has made a difference. An illness like lupus is not something that should be faced alone.