December 9, 2016
In 1997 lupus happened to me. The honest truth is that I spent some time wondering why I had lupus. I didn’t do anything to deserve it but I did review my life trying to figure out how it all went so wrong. This period of introspect about why this happened to me began to dissipate when I took a look at the medical evidence proving that my body was misbehaving, and that no, my sins were not the cause. However, this isn’t true for everyone. Some families have a history of auto-immune diseases or know people with lupus and it is already understood that it just happens. Either way, the question of “why” comes up often when you have lupus–from family, friends, co-workers and like me, ourselves (I’ve got that all figured out now).
When I made the big “I have lupus” announcement, the room became a collection of confused faces. Nobody knew what it was, and I get it because I didn’t know what is was either at first. So my husband and I did our best to explain lupus and I give us a lot of credit for that because we were lupus rookies. After the biology lesson was over the questions went from what to why. At first this question dumbfounded me and I struggled to come up with an answer. I think most of us have a slew of words to throw out there such as genetics, the environment, stress, a virus, etc. It makes us sound like we really know our stuff, but as someone in my lupus support group said, “We don’t know why.” So there you have it. I do let people know that I support to the best of my ability the researchers and doctors that are trying to figure it out.
The funny thing is that when someone tells you they have diabetes or cancer (and other illnesses), the question of why doesn’t enter the conversation. My opinion is that we as a group of lupus survivors can serve each other by responding to the question of why and make it known that this disease requires more attention from everyone. Our family and friends and coworkers should know that we don’t know why and because of that, their support is vital. My hope and maybe yours too, is that one day we will have a better answer.
By Valerie Dennison