Untold Truths About Living With Sickle Cell Pain

For many of us, sickle cell disease (SCD) sets precedence for how we show up in our daily lives. It is an invisible disability that riddles our physical, mental, psychological, and emotional health, without fair warning. Periodic episodes of pain, known as pain crises, are common symptoms of SCD. The intensity of pain can often last from a few hours to several days.

Chronic pain is its own beast

Medical experts believe that pain is a good thing as it is our body's way of drawing attention to something important. But for most people, pain isn't meant to last. For individuals with sickle cell disease, pain does persist. Particularly during a vaso-occlusive crisis when sickled red blood cells — which are stiff and inflexible — get stuck in small blood vessels, disrupting the flow of blood and oxygen to the organs. This is categorized as chronic pain because it goes away and comes back, interfering with daily life and impacting physical and mental health.

Pain and early childhood

According to a recent article by UTHealth, the signs and symptoms of SCD often begin in early childhood. Severity of symptoms can vary from person to person. Frequent and disruptive pain episodes can lead to repeated hospitalizations. This can be upsetting for children and parents alike. The behavioral impact of SCD in young children often includes fatigue, anxiousness, social isolation, and low moods. It can also lead to the inability to form and maintain relationships with peers and difficulties with identity.¹

Pain affects the whole person

Chronic pain is a complex concept that's far from just aching bones and sore muscles. It’s a condition that affects the whole body, taking a toll on your emotions and moods, and as such leads to psychological distress, behavioral changes, and mental health issues. Some of the most common psychological conditions experienced by young patients dealing with chronic pain are depression, anxiety disorders, sleep disorders, and bipolar disorder.

Some of the untold truths about living with sickle cell disease are that recurrent pain and frequent hospital stays can alter the normal development of a child at stages of emotional, socio-behavioral, cognitive, and academic progress. This contributes significantly to impaired psychosocial functioning, altered intra- and interpersonal relationships, and reduced quality of life.

The mental toll of chronic pain

According to a journal article, Cognitive Function, Coping, and Depressive Symptoms in Children and Adolescents with Sickle Cell Disease, "Several studies show that they are at risk for experiencing internalizing symptoms, including symptoms of anxiety and depression, and are more likely to exceed clinical cutoffs compared with their healthy peers."²

Stress, anxiety, and depression

When the human body is in pain, it releases stress hormones. This abnormal chemical reaction makes mood and behavior regulation much more difficult. This brings on anxiety and depression, which are often caused by pain and fatigue. Some symptoms of depression include feeling irritable, easily frustrated, or restless. Anxiety is linked to excessive worry and trouble sleeping.

Living with chronic pain is difficult, and often-times that means turning to prescription pain medications for relief. Many child psychologists suggest that another major concern is opioid use disorder, particularly with patients who are on long-term opioid therapy to reduce their chronic pain. Pain specialists will often suggest complementary treatments like acupuncture, physical therapy, or massage to address your pain relief.

Beyond the pain

Studies have shown that depression and anxiety in children with SCD result from living with a chronic, stigmatizing disease associated with chronic pain, unpredictable painful crises, and cognitive dysfunction in early childhood. Poor mental health can worsen the symptoms of sickle cell disease, making it more difficult to cope with stress and other external triggers.¹

Dr. Shah, a UT Physicians Comprehensive Sickle Cell Center member, notes that early identification and treatment of mental health issues is crucial. This leads to more effective pain management, decreased emergency room visits and hospitalizations, and improved quality of life. Psychological counseling and social support are treatment options that can help patients and families minimize the behavioral problems they face.¹