People living with sickle cell disease (SCD) face difficulties other than just physical health challenges. Because sickle cell is viewed as a Black disease, individuals with sickle cell disease who are transitioning from adolescent to adult life, must deal with stigmatization as they develop their radical identity.¹  The challenges of racism and discrimination may add to the stress of their disease and daily life. Racism² can show up in many ways, such as being treated unfairly by teachers, doctors, or employers, being followed in a store, or being judged by harmful stereotypes. Racism is not just expressed through individual actions but also through structural barriers like fewer resources in neighborhoods where large numbers of people of color live or unequal access to quality healthcare.³ 

People living with sickle cell disease (SCD) in the United States often experience multiple forms of discrimination and stigma² that affect their health, employment, and overall quality of life. Some areas where discrimination may occur include: 

Healthcare Discrimination and Bias: 

• Bias² and Stigma. Because about 90% of people with SCD in the U.S. are Black, racial bias intersects with disease-related stigma. Patients frequently report being labeled as “drug-seeking” when requesting pain medications during pain episodes, despite evidence that opioid misuse is less common among people with SCD than among other groups of people with chronic or acute pain concerns⁴.  

• Provider Knowledge Gaps. Many medical providers and nurses lack training on SCD management, contributing to miscommunication and mistrust between patients and providers.³ Having an individualized pain plan co-developed by a sickle cell doctor can help provide advocacy in this situation.  

• If you are experiencing discriminatory behavior, please reach out to your health system’s patient advocate, patient advisory board, or your local community organization.  

Employment Discrimination: 

• Workplace Challenges. Adults with SCD face high unemployment rates—28% to 52%, compared to the national average of 4–10%. Frequent pain episodes and hospitalizations reduce work attendance and can sometimes limit productivity.  As a result, some employers may make unfair assumptions about ability to work⁵. 

• Legal Protections: Under the Americans with Disabilities Act (ADA) and Family and Medical Leave Act (FMLA), people with SCD are entitled to reasonable and fair accommodations and medical leave. However, discrimination still occurs, and some employers fail to comply with these laws. 

Social Stigma: 

• Beyond healthcare, stigma affects personal relationships and mental health. People with SCD often hide their condition to avoid prejudice, and women with SCD may face discrimination in marriage and pregnancy contexts⁶.  

Stress and Mental Health: 

• Experiencing racism can affect both your mind and body. It can cause increased stress which can lead to symptoms like headaches; stomachaches; trouble sleeping; or feeling anxious, worn out, angry, or hopeless. Over time, high levels of stress can even make some health problems, like high blood pressure, worse. For people already managing SCD, these stress reactions can make coping with the disease even more difficult.  

Remember that you are not alone and there are healthy ways deal with the stress of racism.  Some things that might help you cope are⁷: 

• Spending time with or talking to someone you trust, like a family member, pastor, barber/hair stylist, coach, or friend. 

• Exercising during the day and getting enough sleep at night to keep your body healthy. 

• Taking breaks from watching the news or doomscrolling on your phone. 

• Talking to a doctor or mental health professional to learn about new ways to feel better. 

• Having an individualized pain plan to help advocate for care during emergency room visits. 

If you experience high levels of stress, it’s important to reach out for extra support. 

Additional Resources⁸:  

• Handout for parents/caregivers on supporting youth experiencing racism (English | Spanish) 

• Handout for kids and teens on racial discrimination and mental health (English | Spanish) 
• Handout for teens on racial discrimination and mental health (detailed version) (English | Spanish)