Appearances Can Be Deceptive

It may seem counter-intuitive, but it isn't always helpful to look much better than you feel. One of the ironies of cancer is that often people with early stage disease look worse than those with advanced illness. One immediate explanation for that is that, for example, women with early stage breast cancer who receive chemotherapy lose their hair. Everyone knows that bald=cancer, so people around them respond with empathy and concern. Lots of breast cancer treatments for women with metastatic/Stage IV disease do not cause hair loss, so those women often look just fine.

I have known women who were living with a lot of pain, but looked completely well. They had (thankfully) handicapped parking stickers, but told terrible stories of people yelling at them: "What are you doing in that space?" Many people talk about how their families and friends and colleagues expect them to be completely normal because they look fine. Of course, many of us don't really want to broadcast our illness or medical worries, so it isn't so comfortable to tell everyone : "I may look fine, but I have metastatic cancer and feel miserable."

On a less serious part of the continuum, it takes quite a while to recover from chemotherapy. Weeks after the last infusion, people still generally feel tired and less than fully well--and everyone expects the cancer worries to be done. Remember the rule of thumb: It takes at least as long as the total duration of treatment to feel physically and psychologically recovered. This is a long haul.

From Cure Today:

After Breast Cancer, Looking Normal Isn't Always Feeling Normal

Barbara Tako

I was done with chemotherapy! I was done with radiation! I was done with multiple surgeries, including having my ovaries and uterus removed! My hair was back, and there was some color in my face again! So what was the problem? I didn’t feel normal. In fact, I felt anything but normal. Truly, my weakened immune system landed me back in the hospital with an intestinal infection (C. diff), which is so nasty that it wasn’t a good idea to have visitors.

There is an unhappy little surprise for cancer chemotherapy survivors after their hair grows back. Our bodies are still weakened, and maybe even damaged from treatments. Many breast cancer survivors are on another medication for at least an additional five years that has its own not-so-wonderful side effects. While we struggle to create our “new normal” (I really, really don’t like that glib phrase), we are perceived by those around us as already being “back to normal.”

Wrong. Oh so wrong.

It is great that loved ones are happy for us when we appear to blend back into the pack again. There is no ill will or neglect here. Being treated as “normal again” because we look that way is a perfectly logical and natural response. In a way, it is a relief to blend in again, but when we aren’t feeling great, it can be a little, well, annoying. There, I said it.