Intro

Those who are uninformed about the nature of Sickle Cell Disease may underestimate or down play the pain you suffer. It’s important for family members to understand how severe Sickle Cell pain can be. Doctors, school nurses, teachers, friends, and employers need to know your pain can be more severe than what one experiences after surgery and can be “as intense as cancer pain.”

In a study done by Virginia Commonwealth University Researchers, more than a quarter of the Sickle Cell patients in their study reported being “in pain 95 out of every 100 days. Yet most toughed out even severe, crisis-like pain at home, reserving doctor and hospital visits for just the most intense episodes.”  So, if you come across a person who’s accusing you of exaggerating your pain, you can share those facts with them. Or you could drop a bowling ball on their foot and when they start crying tell them, “Come now, don’t exaggerate your pain.” When I read the above study I thought to myself, “it would be nice to be in pain 95 out of 100 days. That way I would have five days out of a hundred that were pain free.” Generally, to some degree, I’m in pain 100 out of 100 days.

From the time I was eighteen, Avascular Necrosis has affected my back severely enough to cause chronic pain. Though I may experience long periods of time in between pain crises, my back pain is a constant in my life. If I allow my back pain to rise above a certain level, that discomfort will trigger a pain crisis. So there’s a balance that I must keep between enduring my back pain and taking painkillers to both manage my back pain and prevent it from causing Sickle Cell pain.

Since every Sickle Cell patient’s experience is different, the frequency in which one has a pain crisis, or other chronic pain, will likewise vary from person to person. Some patients only have a few pain crises a year while others, like myself, have them with great frequency. Due to the high amount of discomfort Sickle Cell patients often endure, pain management is a big concern in our healthcare. Finding relief can keep a bad crisis from becoming worse. For this reason, learning to manage your pain is of great value.