Advocating for yourself during sickle cell disease treatment

For people living with sickle cell disease, self-advocacy is often an essential skill.

Self-advocacy is the ability to take an active role in your healthcare, including treatment decisions. It involves communicating your questions, needs, and concerns to your healthcare provider. Self-advocacy may come more naturally to some people. For others, it may take a bit of practice.

Why self-advocacy is important for people with sickle cell disease

Sickle cell disease is a rare genetic disorder that affects the shape and function of red blood cells. Due to genetic mutations that are inherited from a person’s biological parents, the body produces red blood cells that are shaped like crescents or sickles.

The main symptoms are anemia (a shortage of healthy red blood cells) and episodes called sickle cell crises. During these episodes, the abnormally shaped red blood cells cluster inside blood vessels, blocking the flow of blood to organs and tissues. This can result in severe, debilitating pain. It can also lead to complications, including damage to the heart, lungs, brain, and other organs. Severe sickle cell crises require emergency medical care and can be life-threatening if treatment is delayed.

In addition to severe pain and potentially life-threatening complications, people with sickle cell disease face significant barriers to care. The condition predominantly affects people of African descent. Many people face bias, stigma, and discrimination when seeking pain-relief medications (a necessary treatment during a severe sickle cell crisis).

There are therapies that can prevent sickle cell crises. There are also therapies that can potentially cure sickle cell disease. However, lack of access to care and cost of care prevent many people from receiving these therapies.

What is self-advocacy and how do you practice it?

Self-advocacy is something that may feel more natural to some people and less natural to others. It’s also something that you can get better at with a little practice.

Here are some basic strategies that may help:

• Whenever possible, work with healthcare providers and healthcare clinics that specialize in treating sickle cell disease.
• Arrive at the appointment prepared, with a list of topics you want to cover and a goal for the appointment. Keeping a symptom journal can help you prepare for appointments.
• If you have concerns about any part of your treatment, speak up. Examples include concerns about persistent symptoms, medication side effects, and cost of treatment.
• Be honest when answering any questions your healthcare providers ask.
• If you don’t understand something or want to understand something better, ask your healthcare provider for an explanation, or ask if they can explain it in a different way.
• It’s normal to feel shy when discussing certain topics. Know that your healthcare provider has had these conversations before. Try telling your provider, "I need to talk about something that's difficult to bring up."
• Do not minimize or downplay pain or other symptoms. Describe your symptoms as accurately as you can. This is information your healthcare provider needs.
• Talk to your healthcare providers or social worker about stigma and bias, and what to do if you feel your treatment needs are not being met during emergency care.
• Ask your care team to create a pain management plan that you can access if you need to go to the emergency room. This file can inform the staff of your condition and avoid delays in pain treatment during a crisis.

Trusted friends and loved ones can also support self-advocacy. Ask for help in preparing for appointments, such as practicing how to approach a topic with your healthcare team. Also consider bringing a loved one to an appointment to take notes and offer support.