I was asked today, that’s day of Lupus Awareness Month, if I saw myself as a warrior or survivor of this illness. It’s an interesting question, and one that is not easily answered. Part of the issue is how I interpret the words and the other part is how I see myself in conjunction to those words. Let’s breakdown for a moment.
Warriors are strong, battle prepared individuals who are typically trained for their fight. If only I had been trained for the life one lives with lupus. I guess it’s fair to say I have been trained, and still am in training, as it is on-the-job learning for the most part. Keep in mind what works for one person may not work for anther due to the individualized nature of the disease. So to me warrior doesn’t fit. It also doesn’t fit because I’ve learned that fighting against lupus is not going to help matters. I needed to learn to live with the disease to get ahead.
Survivors are people who have made it through something. As in there has been an ordeal with an absolute end. Again this is troubling too. Why you ask ever so politely. The thing is I am still living with lupus. As in it isn’t over yet. So no end, just a continuation. To take it to the nth degree, as current treatment goes, I will most likely die from a complication brought on as a subset of lupus. So I don’t see that as being a survivor.
I am a lupus patient. I am a woman who lives with lupus. I am an employee with lupus. The list goes on. But I am also so much more than anything …with lupus. There are, of course, whole aspects of me that do not need to have lupus. So I struggle with how to identify myself and my life with lupus. In fact many will point out that I do tend to post more about lupus during May and not much during the rest of the time. This is somewhat deliberate as an individual I am very clear that I am not my lupus. The drawback is I fail to advocate effectively. So I’m not sure how to answer the question. And I’m okay with that.