Mental Health and Sickle Cell Disease

Complications of sickle cell disease (SCD) can cause a large emotional burden. Pain, fatigue, and sleep disturbance are linked to depression for people with SCD. Depression can worsen SCD complications and lead to substance abuse.

Preventing and treating depression can improve health outcomes and quality of life for people with SCD. One way to do this is to talk to a therapist or counselor. They can help you learn how to cope with and prepare for challenges caused by SCD.

Why is depression common among people with sickle cell disease?

Depression is a prolonged sad mood that interferes with normal daily life. About 1 in 6 adults experience depression during their lives. Anxiety is often connected to depression. People with anxiety have intense feelings of fear, worry, or nervousness.^1,2

About 1 in 3 people with SCD experience depression. It often goes undiagnosed and untreated because symptoms are similar to other SCD complications. The major causes of depression in people with SCD are pain and fatigue. However, other aspects of SCD can affect self-esteem and lead to mental health issues. Additional factors are:^3-5

• Cost of treatments and hospital visits
• Appointments disrupting daily life
• Negative interactions with doctors

Depression leads to worse medical outcomes and more hospital visits. People with depression pay twice as much in healthcare bills. The symptoms of depression also make it harder to manage pain.^6,7

How do sleep disorders impact mental health for people with sickle cell disease?

Many people with SCD experience partially or completely blocked breathing during sleep. This is called sleep disordered breathing, and the most common form is called obstructive sleep apnea (OSA). About two-thirds of children with SCD have OSA.⁸

Sleep disorders in SCD are connected to pain, fatigue, and depression. Acute pain episodes disturb sleep and make sleep disorders worse. A lack of sleep at night contributes to fatigue during the day. This is a major risk factor for depression.^4,6

Sleep disturbance is also a symptom of depression. Studies have shown that nearly every person with SCD and depression reports poor sleep. Sleep disturbance and depression are most common in people with frequent pain episodes.⁴

What is the connection between mental health and substance abuse?

The rate of drug abuse in people with SCD is the same as the general population. Most people with SCD who take opioid pain medications do not become addicted. However, doctors often withhold opioids from people with SCD because of fears of addiction and racially biased perceptions. Long-term therapy with opioids is usually safe and effective for sickle cell pain.^9-12

However, substance abuse is common among people with depression. People with mood-related disorders are twice as likely to abuse substances. Small studies have shown that this is true for people with SCD. People with SCD are more likely to increase their opioid dose if they have negative emotions or expect worst-case outcomes for their pain.^13,14

Where can I go to find help?

Preventing or treating depression and anxiety can help improve medical outcomes. Improving your mental health can help you stick to your treatment schedules, exercise level, socialization, and diet.⁶

People with SCD are more likely to experience mental health complications if they have less social support or less than a high school education. This is 1 reason why it is important to support children with SCD with education and robust support systems.⁵

If you are feeling negative emotions that interfere with your daily life, talk to your doctor or anyone else you trust. You can also call any mental health hotlines. They can help you find a therapist, counselor, or someone else to talk to.

It is often helpful to find a therapist even when you are feeling well. This can help prevent depression. Therapy can help you find ways to cope with situations in your life and prepare for future challenges. Talking to a therapist can help you learn skills to:¹⁵

• Get healthier with diet and exercise
• Overcome fears and insecurities
• Cope with stress
• Incorporate self-care methods into your lifestyle
• Understand how to deal with things that bother you
• Identify what worsens symptoms of depression
• Improve relationships with friends and family