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People sometimes develop an unfair perception of people who have Sickle Cell Disease (SCD), which can lead to bias and stigma. And though there are tips an individual with SCD can follow to minimize stigma, healthcare providers, families, communities and the public at large may also play a role in neutralizing stigma. Getting educated, having compassion, and learning to listen are important first steps everyone can take to overcome SCD-related stigma.

Stigma occurs when a negative stereotype about a group is attributed to an individual. Health-related stigma refers to the rejection of people with certain health conditions, based on a negative stereotype.

FACTORS THAT CONTRIBUTE TO STIGMA IN SCD

There are many factors that can contribute to stigma in SCD. The most common are:

1. Physical factors that make people with SCD stand out. In SCD, people may have a yellow discoloration of the eyes (called jaundice) that may cause people to judge them. Adults and adolescents with SCD may have joint damage, which makes them unable to participate in activities involving physical effort resulting in them feeling different than their peers.

2. Some people with SCD may seem stoic or unemotional. A reduced expression of emotion may be a way of dealing with the severe and chronic pain that accompanies SCD. This may lead others to perceive that a person with SCD is not experiencing pain, when he or she really is.

3. People with SCD often know what pain medication works for them and even what doses are needed. People with SCD experience chronic pain and have experience managing frequent, acute pain crises which may give providers in the emergency room or other settings the false impression that they are affected by substance abuse, rather than simply being knowledgeable about their health needs.

4. People with SCD often suffer from extreme pain and fatigue. The frequent pain episodes and extreme fatigue can lead to absenteeism from both school and work. This may create a false impression that the person with SCD is “lazy.”