Jane is a ten-year survivor of a very rare form of cancer Myelodysplastic Syndrome. She has enjoyed several exciting careers including a librarian, counselor, teacher, and writer. She loves to write about surviving cancer, overcoming hearing loss, and her hearing ear service dog, Sita.
People may tell me that I look good, but I don't always feel that way.
Several people with cancer have mentioned that they are often told platitudes like, “You don’t look sick,” “You must feel great,” or “Are you all better?”
I get these remarks all the time. To make matters worse, I will never be off chemo because I have a blood cancer, so I am never “cured” or “well.”
What most people don’t realize is I always pay the price. Yes, there are days I go out and do a lot. Sometimes I have bunches of errands to run. I may be with friends or family visiting from out of state and I don’t want to miss anything. Holidays are always strenuous. In addition to the cancer, I have fibromyalgia and severe arthritis. I also suffer from a profound hearing loss and the constant strain to hear and lip-read exhaust me. I was born with an immune disorder and half of my immunity is gone. So I have quadruple whammy! As a result, I push and push and spend the next day in bed
Recently, I had an author’s fair to sell my books during the day, and a retirement party the same evening. Obviously neither one of these events could be changed or rescheduled. I am very careful if I have control not to overcommit myself, but sometimes I have no say. After this crazy Saturday, I intended to go to church the next day. I got up and felt like I had been hit with a sledgehammer. Every part of my body was fatigued and ached. I went back to bed and spent most of that day sleeping.
My mother battled horrible pain from arthritis, scoliosis and spinal stenosis until she passed at age 93. The doctors did not understand how she did it. She would push very hard and say to me, “Half the work in the world is done by people who do not feel good.” Never wanting anyone to know the pain she was in she would comment, “If I complain I only make others feel bad and I won’t do that!” Sympathy for not feeling well obviously did not run strong in my family!
I honestly do realize people are complimenting me and encouraging me when they say how great I look. And I take it that they mean well. After all, do I really want people to walk up to me and say, ‘You look terrible, how do you feel!”
Sometimes I think people do not truly believe I have cancer because it took me long enough to realize that I did. So, a little part of me is asking myself if they really think I am ill. I used to try to explain that I may look good, but still am on chemo. I soon realized that people who do not have a chronic disease are not going to “get it.” There are many chronic diseases causing fatigue like fibromyalgia, multiple sclerosis, lupus, and a host of other ailments. Cancer warriors are not alone.
However, the difference I see with cancer survival is the combination of the cancer and the chemo can be devastating to our energy.
I also have to place some of the blame on myself and admit I can put on a wonderful act. I have done storytelling, public programming and teaching for my entire life. I am similar to an actor or actress because I have learned to put aside the way I feel and go to a podium or program and perform. I collapse later.
Sometimes I want to scream. “I feel rotten. I may look good, but do you realize the price I pay? I am a charlatan putting on an act.”
Then I come to my senses and realize no one ever knows another person’s pain. William Shakespeare said it best in the play As You Like It when he said “All the world’s a stage and all the men and women merely actors.” I do not know what other people are going through either.
Instead of trying to explain the fatigue, I smile, say thank you to the person and change the subject. But I know I will go home and pay the price.