Leukemia is a strange disease. As I observe people in the Leukemia Center waiting rooms, I'm hard pressed to know who is the patient and who is the caregiver. With some exceptions, we don't look sick. Of course, there are the few who arrive in wheelchairs or have bald heads or wear head covers, but for the most part, we are a healthy looking bunch. The only way to pick us out of the crowd is to look for the ID wristband or the telltale colorful wrap indicating a recent blood draw.
As cancer patients, we have good days and bad days. The same goes for our looks, too. Some days you don't look great. Other days you look just fine. However, without the outward signs, people don't understand the battle we wage. It's not that we are seeking pity, but we need the support of our family and friends.
'We look healthy. We aren't'
People don't understand that we may be in a life and death struggle.
I had some friends who refused to get the flu shot -- ever. What they don't understand is that even if I take the flu shot, I still have about a 30% chance that I will get the illness.
That is why most of us wear masks when we are in public (even though that is embarrassing), or we don't go out in public at all. If everyone had the flu shot, the risks would be reduced exponentially.
Others just don't understand our predicament. We lookhealthy. We aren't. We are sick. We are vulnerable. Even if we don't look like it.
Treating friends and family with education and patience
The question, then, is this: "How do we handle this problem?" The answer is two pronged, education and patience. Those who are near to us, family and friends, need to be educated about leukemia and other types of cancer. These people need to know how serious the disease is and that we will not always look sick. We need them to know how to help us stay healthy. My family and friends know not to come knocking on my door if they suspect they have an infectious disease -- even the common cold. They call or email or text. It's not convenient, but it works.
For those more distant, we must simply be patient with their ignorance and take our own precautions. We must do our part. We must wash or sanitize our hands frequently. We must mask up when we are vulnerable. We must be bold enough to ask people to keep their distance. We must be alert enough to move away when someone coughs or sneezes. Why tempt fate?
Cancer is a strange disease. It is an insidious disease. No, we don't all look sick. But we are. And we need to take precautions to protectourselves from complications.
Chronic lymphocytic leukemia (CLL) is one of the cancers MD Anderson is focusing on as part of our Moon Shots Program to dramatically reduce cancer deaths. Learn more about our CLL Moon Shot.