I didn’t post much the last few weeks and I was thinking about why that happened and how I felt about it. A chronic illness is one that is always present in some form or another, by definition. It is this chronicity that can be especially problematic at times when you just don’t want to be sick or involved with sickness. It is occasionally nice to pretend that life is just normal, whatever that is.

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.

My wife and I recently went back to the UCLA Medical Center for some additional tests that were recommended by my wife’s rheumatologist and a pulmonary specialist. It was another day of work missed for me, and another day that my wife had to travel.

We got very little feedback about the tests. I understand that it takes some time to evaluate the tests and scans, but even while the tests were being done, we were given the impression from the technicians that there was nothing of interest.

I think both my wife and I had a feeling of disappointment. I realize that no news is usually good news, but it’s such an ordeal to find a babysitter, make the four hour drive down there, and then take another four hour drive back. It just seemed like such a waste of time.

We know that it could be a lot worse, and we are thankful to not have bad news, but sometimes we would just like to KNOW SOMETHING.