June 6, 2010

(from a wonderful blog, femmenoir)

I cannot count the times people have told me “but you can’t die from lupus” or “at least you don’t have cancer.” The former is obviously wrong because people die from lupus all of the time. The latter is equally wrong in many respects because, like cancer, systemic lupus takes your body down, causes a shut-down of organs, goes from one organ to the next, or, with a compromised immune system due to the medications, you may find yourself susceptible to infection like Lucy Vodden.

As a friend of mine said recently — she is a breast cancer survivor — “cancer and lupus are somewhat similar.” My friend and I have cussed and discussed our war stories as she’s battling cancer and I’m battling my immune system. Her chemo was more intense than mine but we both experienced the same symptoms, the nausea, the overwhelming fatigue, dark nails, hair loss, the metallic taste, and I won’t get into the other things.

During one of our conversations on chemo while sitting at an outdoor coffee shop, a woman walked over to us — another cancer survivor — and asked us if we were cancer survivors too. My friend answered first saying she is a breast cancer survivor, I responded that I have lupus. The woman was puzzled by my answer. “You’re receiving chemo for lupus?” she asked. I told her yes and explained why. I don’t think she ever understood why because, in her mind, chemo is reserved only for those who have cancer. When I informed her Natalie Cole received chemo and radiation treatments for hepatitis C, she really lost it in a whirl of confusion finally admitting “I didn’t know chemo was used for other diseases.”

My girlfriend and I are constantly talking about forming a group to include women with chronic diseases, inclusive of any and all autoimmune diseases and cancer. Not long ago I joined my friend at an impromptu meeting of cancer survivors and when I mentioned my having lupus I quickly became persona non grata. Dismissed, as it were because I, as one woman pointed out, could neither know nor understand what cancer can do to a woman’s body. “You haven’t suffered like I have” she said rather self-righteously. I told her “you haven’t suffered as long as I have.”

She and I finally came to a meeting of the minds and understanding as I explained my personal battles over the years. Education was key because she didn’t know what lupus was, how it affects our bodies, what we go through, the medications and finally, she had no idea some of us must endure the discomforts of chemo as well. When I pulled off my wig to show her my head, she understood that I understood.

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