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’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?

• 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.