I heard the word victim on a television show my husband and I were watching the other night and it got me thinking about the powerlessness the word implies. One online dictionary defines victim as, “someone or something killed, destroyed, injured, oppressed, or otherwise harmed by, or suffering from, some act, condition, or circumstance: victims of war.” A few years ago my car was broken into by a group of teenagers. I remember the judge referring to me as the victim when I subsequently went to court. While being referred to in this way wasn’t pleasant, I could agree that, in this instance, I was indeed victimized
Sometimes circumstances – such as when my car was broken into – put people unwillingly into the role of victim. While I didn’t have much of a choice about becoming a victim of theft (my car doors were locked and the car was parked in my driveway!), I do have a choice about how I face living with lupus. I refuse to be a victim of lupus. Yes, I am a person who lives with a chronic disease and, as I often say, Cindy has lupus, lupus doesn’t have Cindy. And of course, given the choice I would not have it at all. But until a cure is found, I can choose how I live with the disease and can control the power I allow it to have over my life. I do not choose to see myself as a victim “suffering from” lupus. I like the quote: Pain is inevitable, but suffering is optional. While the pain of living with lupus is very real and something that I must deal with daily, I never want to be the martyr or the victim who allows the disease to take away my joy in living. I do not want people to look at me with sad eyes and sympathy and feel sorry for me. Instead, I much prefer someone to be empathetic and simply try to understand what I am going through. I know this can be difficult and the people close to me struggle with this. The difference between sympathy and empathy is huge from my perspective. Even well-intentioned sympathy in the form of “I feel so sorry for you,” makes me feel like a victim of my disease and diminishes the power I feel I have over it. Empathy, on the other hand, someone saying something as simple as “I understand,” empowers me and allows me to feel that others are supporting me; it gives me a feeling of more power. As subtle as this shift in power may seem between the uses of these two words to those who do not have a chronic illness, to many of us who do live with illness, it is huge.
For the three decades that lupus has taken up residence in my body, I have worked to live my life fully, despite its presence. This has not always been easy for me or for those who love me. I wake up each morning and take a handful of medicine and move a bit slowly until the joints decide that are ready for the day. I am not ever able to completely ignore the fact that I have the disease, but I do refuse to be a victim to it. In a court of law, I feel certain that a jury would send my lupus to jail and throw away the key for the harm it has caused. In TV land that might be an option, but in reality I will remain Cindy who has lupus; I will not allow my power to be diminished by the cruel and mysterious disease. This is my life and it I choose to be a victor, not a victim.