Interpersonal Racism and Sickle Cell Disease

Interpersonal racism occurs when personal implicit (implied) or explicit (obvious) racial beliefs affect public behavior. Interpersonal racism greatly affects the lives and healthcare of many Black people living with sickle cell disease (SCD).

Even well-intentioned doctors and nurses have unconscious judgments and racial biases. This negatively impacts the care they provide to people of color. In busy and stress-filled emergency departments, the results of this bias can be even worse.

While you should not have to consider this during a pain crisis, there are steps to take to improve your experience in the ER.

How does interpersonal racism affect interactions with doctors?

During severe acute pain, people with SCD often face racist attitudes by doctors and nurses in hospitals. Doctors often label people with SCD as “drug seekers” when they come to the ER for treatment. People with SCD are not more likely to abuse or be addicted to opioids than the general population. However, more than half of ER doctors believe that 1 out of 5 people with SCD misuse opioids.1,2

Because of this misperception, people with SCD report negative interactions with doctors, including:3

  • Low involvement in decisions about their own care
  • Staff giving conflicting information
  • Inability to tell anyone about concerns, fears, or anxieties
  • Unclear answers to questions

There are no lab tests to confirm pain. The best analysis of pain is the person’s own report. When doctors are suspicious of personal reports of pain, misperceptions cause significant delays in treatment. People with SCD wait 25 to 50 percent longer for pain management than people without SCD who experience similar pain.4,5

Why do people with sickle cell disease report negative interactions with doctors?

This perception is largely due to doctors’ implicit bias that Black people are more likely to be seeking drugs. In general, Black people are less likely to receive opioid prescriptions.6

ER doctors do not get enough education or experience with SCD to prevent these biases. There are also not enough primary doctors who specialize in treating people with SCD. Even doctors who specialize in blood disorders (hematologists) usually focus on blood cancers because it is more profitable.7

ER doctors are taught that requests for specific pain medicines at specific doses may indicate “drug seeking.” However, people with SCD are often informed about their condition and know their medical needs exactly. So they are forced to decide between letting ER doctors suggest a pain medicine or risk being seen as suspicious by suggesting something themself.7

To cope with this treatment, many people with SCD report getting dressed nicely to try to avoid judgment, and many people choose to avoid care altogether. Delaying or avoiding care increases the risk of poor health outcomes.8

How can emergency room experiences improve?

Hospitals and clinics must be trustworthy spaces for people with SCD. Doctors and nurses need to be aware of their own biases and work to treat people equally. The burden is on healthcare workers to fight against racial inequities in care. Some ways they can address interpersonal racism include:8

  • Speaking openly about race with colleagues, focusing on people’s experience with SCD
  • Allowing people with SCD to educate doctors about the impact of racism on their lives
  • Implementing mandatory, regular racial implicit bias training
  • Practicing mindfulness and self-reflection in care
  • Avoiding the word “sickler” and educating others to avoid it
  • Reporting events when they happen

Unfortunately, negative interactions still happen in the ER. You should not consider yourself responsible for them. However, there are ways you can reduce the impact of interpersonal racism on your physical and mental health:9

  • Stay up-to-date with your medical care
  • Keep yourself informed about your condition
  • Bring a hard copy of your pain management plan
  • Provide resources to hospital staff, including advocacy contact information
  • Provide your primary doctor’s contact info, and encourage the ER to reach out to your SCD specialist
  • Document the symptoms and location of acute pain before and during pain management
  • Find ways to prevent, reduce, and manage pain at home
  • Discuss your experiences in support groups, therapy, or as an advocate

Racism is firmly embedded in American society. Doctors, lawmakers, and advocates need to work together to actively fight against inequities in healthcare.

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Written by: Matt Zajac | Last reviewed: January 2021