When acute pain cannot be controlled at home, stronger pain medicines in an emergency room (ER) are needed. However, seeking help at the ER is often a stressful experience for people with sickle cell disease (SCD).
While experiencing severe pain, people with SCD also often encounter intense stigma from ER doctors. This stigma is based on the racial bias that people with SCD are just “drug seekers”. Combined with other societal racial inequalities, this often causes long delays in treatment.
Talk with your doctor about what you can do to reduce the impact of stigma on your mental and physical health. They can help you create a pain management plan that includes when to go to the ER and what to bring when you go.
When should I go to the emergency room?
Your pain management plan should include when to seek help in the ER. Make sure it also includes where to go and how you will get there. This will help you get care as quickly as possible and minimize hesitation.
These aspects of the pain management plan should also be shared with children’s teachers and daycare staff. Get emergency medical help right away if you or your child experience:1,2
- Symptoms of severe anemia (extreme tiredness, shortness of breath, dizziness, or palpitations of the heart)
- Fever above 101°F
- Symptoms of acute chest syndrome (severe chest pain, coughing, or shortness of breath)
- Symptoms of a stroke (sudden weakness, numbness on 1 side of the body, confusion, trouble speaking or seeing)
- Priapism (painful erection lasting for longer than 4 hours)
- Severe acute pain (pain that does not subside with at-home treatment)
What should I bring with me?
The doctors in the ER may not be as familiar with you as your primary doctor. They may also not be as experienced in treating people with SCD. Bring a printed copy of your pain management plan to the ER so that the ER doctors have access to:3
- A list of all of your medicines
- Your medical history
- Your regular doctor’s contact information
Why do stigma and systemic inequalities cause problems?
Ideally, doctors should begin relieving pain within 30 minutes of arriving at the ER. However, people with SCD frequently have difficulty getting proper treatment. Studies show they wait 25 to 50 percent longer for pain medicines than people without SCD who experience similar pain. Adults with SCD wait an average of 90 minutes in the ER before being given pain medications.4-7
Systemic inequalities and stigma limit access to healthcare for Black people with SCD because of their ethnicity. Some examples of this include:6,8,9
- Lack of laboratory tests to assess pain
- Lack of doctors experienced in treating SCD
- Overcrowding at local hospitals
- Perception of people with SCD as “drug seekers”
The best way to assess sickle cell pain is the person’s own report of their pain. Pain relief should not be delayed while other tests are performed. However, many people with SCD are forced to wait until blood tests confirm a crisis.10
The delay is also because of stigma and biases surrounding people with SCD, most of whom are Black. Studies show that Black people are less likely to receive opioid prescriptions than white people.11
Doctors often overestimate opioid misuse in SCD because of implicit racial biases. Only 2 to 5 percent of people with SCD have an opioid addiction (which is similar to the general population). However, studies show that more than half of ER doctors believe that over 20 percent of people with SCD misuse opioids.12,13
What can I do to reduce the impact of stigma?
Doctors must receive continued education and updated guidelines to reduce negative attitudes and stigma surrounding SCD. Structural changes need to ensure that SCD research is well-funded and that people with SCD have access to quality care. You can also take steps to reduce the impact of stigma on your physical and mental health.13
Support groups, counseling, therapy, and advocacy are powerful ways to cope with stigma. Here are more tips to help prevent stigma from affecting your healthcare:14
- Stay up to date with your medical care
- Keep yourself informed about your condition
- Work together with your regular doctor and SCD specialist
- Find ways to prevent, reduce, and manage pain at home
- Make sure you always have access to your pain management plan (electronic or a hard copy)
- Document the symptoms and location of acute pain before and during pain management