Sickle cell disease (SCD) is the umbrella term for a group of conditions that affect the hemoglobin in blood. It causes pain and ongoing health concerns. Some people with SCD may experience mental health symptoms as a result of living with their condition.

SCD affects 100,000 people in the United States and is most common in people of African or Mediterranean descent. It is a lifelong, inherited condition in which a person’s red blood cells are “sickle-shaped,” causing problems such as blocked blood vessels.

SCD can cause acute and chronic pain, infection, stroke, and other medical issues. Living with the condition can be physically, emotionally, and socially challenging. As a result, many people with SCD find that it affects their mental health.

This article looks in more detail at how SCD affects mental health. It also explains the role of sleep and how a person can find support.

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SCD can lead to various health complications. Acute episodes of pain, known as “crises,” can happen without warning. They occur when sickled red blood cells block small blood vessels, resulting in a lack of oxygen to surrounding tissues and tissue damage or death.

People with SCD must stay vigilant to warning signs that could signal a heath threat. They also have to make lifestyle choices that minimize the risk of adverse health events. Being on high alert in this way can be draining and may lead to stress, anxiety, and depression.

The medical costs associated with living with SCD can also contribute to stress. A 2022 study involving people aged 64 years and under with health insurance found that individuals with SCD pay almost four times more in out-of-pocket medical costs over their lifetime than those without the condition.

According to a 2018 study, stigma surrounds SCD, which could exist for various reasons. As SCD is more prevalent in certain ethnic groups than others, racism may play a role in stigmatizing people with SCD. Other factors that may contribute to stigmatization are:

  • having a condition with “disease” in its name
  • experiencing delayed growth and puberty
  • taking opioids to manage pain
  • socioeconomic status

Feeling stigmatized can adversely affect a person’s mental health.

Research has found a link between SCD and depression. A 2019 study reports that out of 73,225 people hospitalized with SCD, 8.6% also had depression. Depression was more common among adults aged 35–50 years and more likely to affect females than males. Although most people in the study were Black, white people were more likely to have depression.

The study authors note that people with SCD and comorbid depression may experience worse health and require longer stays in the hospital. As a result, they incur higher medical costs. A 2017 study supports this, finding that people with SCD and depression incurred more than double the medical costs of those without depression.

Depression and anxiety often coexist. For people with SCD, concerns about their health, a fear of becoming ill or dying, and many other worries can all contribute to anxiety.

According to a 2016 article, anxiety and depression can lead to worse pain, which can affect daily physical, social, and emotional functioning.

A 2020 study found that a lack of screening for psychological mood and anxiety disorders among adults with SCD could result in psychological problems going unrecognized and untreated.

People with SCD may experience obstructive sleep apnea (OSA). OSA is a form of disordered breathing in which a person can stop breathing for periods during sleep. These disturbances make it more difficult to have deep, restorative sleep.

Shorter sleep duration is associated with behavioral problems, daytime sleepiness, and feeling overtired. Lower sleep quality increases the risk of impaired daytime and cognitive functioning.

People with SCD may find it helpful to talk with a trained counselor about their worries and concerns. Living with the condition affects people in different ways, and counselors can help people work through difficult feelings. Family members of people with SCD may also benefit from counseling.

The Sickle Cell Disease Foundation offers a free one-to-one counseling service, and people can book an appointment online.

The Centers for Disease Control and Prevention (CDC) provide information and resources that a person with SCD may find helpful in understanding and managing their condition.

OneSCDvoice.com is an online platform where people with SCD and their families can connect with people in a similar situation and find information and resources.

People with SCD may experience mental health symptoms due to living with the condition. Anxiety and depression may result from ongoing pain, feelings of isolation, worries about medical care and costs, and other psychosocial factors.

People with SCD may also experience sleep apnea, which might prevent them from getting restorative sleep. This can affect their ability to function during the day.

A person can find support from trained professionals and others with the condition. Counseling may help a person cope with challenging feelings and improve mental health outcomes.