What Exactly is Lupus?

I have received a number of excellent questions over the past few months about my condition. Given that lupus is not generally well-understood by the wider population, I thought I would give you a glimpse into what I have learned about the condition since my diagnosis.

Originally, I was diagnosed with a vague “autoimmune disorder.” When I first began to have debilitating symptoms, my inflammation levels were incredibly high, but most of the rest of my blood work looked clean. It can take years for individuals with autoimmune disorders to be properly diagnosed because certain factors have to be lined up all at once for a diagnosis to be made.

In addition, autoimmune symptoms often mimic other conditions. For example, before my diagnosis was made, my doctors first had to rule out bone cancer, which my symptoms were mimicking at the time. (I keep photocopies of my clean leg x-rays mounted to my refrigerator next to my goal poster. When I’m feeling down about my pain or fatigue levels, these images help me to remember that I don’t have bone cancer. I am grateful for that fact every day.)

One of the reasons that lupus and autoimmune conditions like it are so difficult to diagnose is that lupus is a condition that may attack every major organ and kind of tissue in the body. As a result, symptoms can not only mimic other conditions, they can change over time. Mine certainly have. As a result, it has become incredibly important for me to track my symptoms over time. Failure to report changes in my condition to my rheumatologist can lead to serious complications.

Lupus is chronic. It will therefore be something that I will be dealing with for the rest of my life. Thankfully though, many lupus patients are able to reign their symptoms in and remain asymptomatic for long stretches of time. However, because lupus can attack any cell in the body, the condition ranges from mild to life-threatening in various patients. When lupus tells the body to create autoantibodies to destroy healthy tissue, the immune system responds by creating unhealthy levels of inflammation within the body. Autoimmune attacks can also produce damage outright, in addition to inflammation. This process often hurts like hell.

On the Lupus Foundation of America’s website, there is an interactive tool that explains how lupus may affect every major system in the body. Anyone interested in learning about lupus symptoms and about the condition’s general potential impact should check it out. It can be viewed at: http://www.lupus.org/resources/impact-of-lupus-on-the-body

Lupus is a complex disease that affects a minimum of 1.5 million Americans. Most patients are women. The condition most often develops during their child-bearing years.
It is important to understand that lupus is a so-called “invisible disease.” At the moment, if you looked at me you would be able to tell that I am tired, heavier than usual and losing my hair (unless I’ve just washed and dried it, in which case I am just one cute, tired mama). But if you saw me wince, double over or struggle to focus my eyes, you would not be able to tell why I am in pain. This “invisibility” can be truly tough on lupus patients because most of us don’t really look that sick. Even when our symptoms are debilitating, we may look fairly healthy. This creates an interesting game of social expectations among individuals who do not understand the disease.

Finally, I believe it is important to note that just like many cancer patients, many lupus patients tend to be fierce, brave, caring people. Having to battle your own body each day while simultaneously embracing and caring for it does something interesting to a person. Breast cancer survivors may wear pink while lupus patients wear purple. But in many ways, our inner battles seem to produce many similar messages of hope and strength within affected communities.

I do not think I’m yet at a place where I can say that I am “grateful” for my lupus, as some fellow lupus patients have said. But it has certainly compelled me to listen to my body, to redefine my priorities and to place what is truly important in my life first. It is what it is, for now… for better and for worse.

I recently heard Jillian Michaels say that when one is struggling with a true life challenge that a change in perspective can alter everything. “What if,” she said, “Your battle inspires someone else or yourself to come back better and stronger and ends up being the comeback of a lifetime?” I may not be grateful for my lupus. But it is giving me the opportunity to make the comeback of my lifetime so far. And that opportunity may indeed be a reality worthy of sincere gratitude.