Sometimes There Are No Answers

"The doctor's not answering my questions," is one of the most common complaints that I hear from lupus patients and their families. In fact, I had the same complaint when I was first diagnosed. After 14 days in the hospital, I finally had a diagnosis for what had been bothering me for 38 years-systemic lupus erythematosus. A month later, I visited my rheumatologist for a follow up appointment. I had three pressing questions:

1. Is this progressive?
2. Will I become disabled and lose my independence?
3. Will it kill me?

He could not honestly answer those questions. Why? Not because he was trying to keep information from me, but because there is no clear answer. I was diagnosed in 2003. Since then I have done a lot of reading and learning.

Is lupus progressive? It can be. But it can also go into remission. A medication that prevents or slows organ damage in one patient may not work on another. Lifestyle and attitude have a lot to do with how lupus behaves as well.

Will I become disabled and lost my independence? No one knows. Most cases are mild to moderate, but it can be disabling.

Will it kill me? Maybe...maybe not. Lupus patients do have higher risks for heart attacks and strokes. Organ damage can lead to death. But, with good medical management and a proactive approach most lupus patients live a normal life span.

So, my doctor was not keeping anything from me. Sometimes there are no answers!