Not Every Illness Is Lupus-Related

Excerpted with permission from Lupus, My Doctor, and Me
by LRI National Coalition members Anita A. Fricklas, M.A., and Stuart S. Kassan, M.D.

Every once in a while, each of us comes down with an acute illness that takes precedence over the everyday problems of dealing with the effects of lupus. The additional malady is usually self-limiting, but really gets a lot of sympathy from friends and family. This is especially true when the evidence of the illness is very apparent.

I recently caught croup from my four-year-old grandson. The adult version of this is pharyngitis, an infl ammation of the pharynx, which causes you to lose your voice. Not so terrible, really. Some of my friends probably thought it was a blessing—a quiet Anita for a few days. I could only whisper, and not very well at that. My husband is somewhat deaf, so that added to the problem since he couldn’t hear me at all. (Perhaps he thought that was a blessing, too!)

Since I was visibly incapacitated, everyone was very sympathetic. People called to inquire about how I was feeling; they brought dinner; they offered rides to the doctor and trips to the market. I was very well cared for.

As I said, though, this illness is self-limiting. I was soon cured. My voice returned to normal. And this “croup” was but a memory in a few weeks.

Not true for lupus.

That’s not to say that my friends and family aren’t concerned about me the rest of the time. It’s just that having a chronic illness gets old, not just for ourselves, but for those who love us, too. It’s hard for them to relate to not feeling well much of the time.

It’s hard for them to know what it’s like to have lots of energy one day and not be able to get out of bed the next. It’s especially hard to look at us and think we are looking so well, when they know that we probably are not feeling very good.

So when we have something that they can relate to, like losing our voice or breaking a leg, it’s almost a relief. They can be empathetic because they’ve been there too. They know what it’s like to hobble on crutches or to have a sore throat. That’s comforting to them, in a way, because they know that we shall recover just like they did—none the worse for having suffered through it.

There is an added problem, though. We can’t just ignore everyday medical problems as others can. A virus can turn into a bacterial infection very quickly for those with compromised immune systems such as people with lupus.

A pain in the chest can be a strained muscle or pericarditis. The medications we sometimes have to take, such as steroids, put us at greater risk for complications from simple maladies. We spend lots of time going to doctors to rule out more serious problems than the general population does.

It gets old, believe me! Yet if we choose to ignore the possibilities, we compromise our health more than the average person does.

I am grateful that my friends and family overwhelm me with attention when I have some little thing, because I know that what they are really saying is, “I wish I could help with the bigger issues. But at least I can help you through this one.”

Friends and family are often frustrated by our need to be extraordinarily compulsive. For that matter, patients early in their course often rebel against this concept. This rebellious feeling is often a result of lack of understanding of the potential consequences of letting an early problem become a larger problem. Usually it takes time and learning from one’s mistakes.

Over time, patients become smarter, and as a result their disease becomes much less of a problem because of their ability to prevent problems before they occur. Our daily struggles are ours to deal with. Sometimes they are overwhelming; sometimes they are daunting. But we go on to meet the challenges of a new day with hope in our hearts and sunshine in our spirits. That’s the best we can do.

Copyright @ 2011 Anita A. Fricklas, M.A., and Stuart S. Kassan, M.S.