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Hidden Battles: Mental Health Struggles of Sickle Cell Warriors

Sickle cell disease (SCD) is a hereditary condition mainly targeting beta hemoglobin, which is essential for oxygen transportation in red blood cells. The cells tend to turn rigid, crescent, or sickle-shaped if there is insufficient oxygen. This may block the small blood vessels from having a passage, causing a vaso-occlusive crisis to occur. The process of vaso-occlusive crisis derails the circulation of oxygen-rich blood to critical organs and tissues, eventually causing damage. The crisis manifests itself as the person experiencing extreme pain at the blocked site.

Organs that vaso-occlusive affect the most include the brain, lungs, kidneys, and spleen. Excruciating pain occurs typically in the penis (for men), back, extremities, abdomen, joints, and chest. These crises can result in frequent hospitalizations and physical complications. Such circumstances are what, in most cases, lead to psychological and emotional disturbances and mental health problems in people with SCD

Sickle Cell Disease and Mental Health

Enduring the challenges of sickle cell disease requires resilience in the face of its adverse effects on physical and psychological health. Common factors or stressors that might lead to mental health disorders for someone with sickle cell disease include:

Feelings of distress and hopelessness caused by recurrent episodes of debilitating and severe chronic pain
Frequent hospitalizations and treatments that can cause medical trauma
Family stress. The disease can affect the entire family. Some parents or family breadwinners are sometimes forced to resign from their jobs, others take frequent time off work, and others, unfortunately, get fired, causing financial problems in the family.
The financial burden of the disease
Uncertainty about the person’s life expectancy and prognosis
Limited mobility, leading to inability to earn a living through working, inability to socialize, and challenging time engaging in daily hobbies, games, and other fun activities
Missing school
Feelings of embarrassment and shame because of social stigma and misconceptions about the disease
Limited access to professional care for patients from marginalized communities

Sickle Cell Disease and Depression

Depression affects cognitive, emotional, and behavioral performance. Some signs include extended unhappiness and decreased interest in previously fun activities. It is a common but serious mental illness. In 2023, a nationwide survey in the United States found that more than 30% of people have dealt with depression in the past, and around 18% were at the time of the survey battling the illness. It affects women more than men and younger people more than older ones. It commonly appears in the late teens and early adult years. However, depression may afflict anybody, regardless of background or age.

Mental health researchers have also found a direct link between depression and sickle cell disease. A 2019 survey done on 73,225 hospitalized patients with SCD found that 8.6 percent were also grappling with depression. The study also found that the co-occurrence of depression and SCD was more likely in females and middle-aged adults between‌ 35 and 50 years.

Nevertheless, other surveys indicate that SCD patients have even greater rates of depression. Research published by the National Center for Biotechnology Information found that more than one in three (35.2%) SCD patients included in the study also grappled with depression. It remains untreated and unidentified in many circumstances. This is because many depressive symptoms are often signs of other SCD complications. Researchers have also noted that depressed SCD patients are more likely to experience worse health and need more extended hospital stays, hence incurring higher medical expenses. According to a 2017 study, the cost of SCD patients with depression was more than twice as high as that of those without depression.

Common symptoms of depression that often worsen the sickle cell condition include:

Persistent feelings of hopelessness, sadness, emptiness, and tearfulness
Loss of interest in hobbies or activities you previously found fun, like sports, socializing, and sex
Constant feelings of restlessness, frustration, anxiety, and irritability
Changes in eating habits (eating much less or more than usual)
Trouble remembering things, concentrating, thinking, and making decisions
Sleep disturbances (oversleeping and insomnia)
Lack of energy and excessive tiredness so that even small, normal, easy-to-do tasks take too much effort
Feelings of guilt, self-blame, worthlessness, and over fixation on past mistakes and failures
Frequent thoughts of death and suicide and self-harm attempts

For some people with sickle cell disease, depression symptoms can be amplified by their condition, causing complications that can be so serious that they result in noticeable challenges in handling day-to-day tasks such as working, relationships with others, school, and social activities.

Sickle Cell Disease and Anxiety

It is common for SCD fighters to battle anxiety in addition to depression. When you suffer from anxiety, it’s as if you’re always on edge, feeling extremely uneasy or terrified, sensing danger, even where there is none. No matter how imaginary or real the threat is, your body goes into hyper-alert mode to cope with it. Symptoms often include excessive irritability, restlessness, chronic fatigue, and worry. Plus, it may disrupt your sleep, cause you to tremble, and sweat profusely.

Someone with sickle cell disease will often be anxious about their life because of various reasons, including:

Worry about increased susceptibility to infections, damage to vital body organs like the brain, lungs, kidneys, and spleen, and acute pain crises, among other health complications
Worry about survival prospects, long-term health prospects, and other issues surrounding uncertainty in prognosis
Fear about the symptoms worsening or the condition progressing because of the lack of a definitive cure and limited management options.
Concerns about independent living and fulfillment in the future due to adverse impacts of the condition on various aspects of daily life like social activities, education, and work
Worry about the affordability of frequent medical visits and hospitalizations.
Reduced life expectancy
Worry about passing the condition to their offspring, as the SCD is a genetic

Finding Light in the Dark: Navigating Mental Health Challenges with Sickle Cell Disease

Dealing with straining mental health illnesses like anxiety and depression is very ordinary for someone living with sickle cell disease. This is how a lot of people in your shoes feel. However, there are methods to manage your mental health and improve your general well-being.

The Power of Positive Thinking

Humans are pre-wired to see positives in each circumstance less predominantly and lean more towards the negativity. However, positive outlooks, affirmations, and mindsets can help counteract this negative bias. A 2015 study revealed that positive affirmation can redirect thought processes, positively impacting the brain’s neural pathways. This can help manage unhealthy, negative thoughts often associated with sickle cell disease, depression, anxiety, and other physical and mental health issues.

When you cultivate a positive mindset, you are not aiming to ignore the harsh realities of grappling with mental health issues and SCD. Instead, you strive to reframe your challenges with your condition as an opportunity to grow, develop resilience, and manage your mood. It’s an effective management tool to add to your treatment plan. When you adopt a positive outlook, you can:

Boost Immune Function: Optimism not only enhances your mood. Research has indicated that seeing your glass as half full, not half empty, also improves your immune system. This is vital as SCD can raise the risk of infections, as sickle-shaped cells can harm the spleen, an organ that aids in the defense against infections. This damage could increase a person’s vulnerability to infections like pneumonia. In addition, mental health conditions such as anxiousness and depression that SCD warriors often battle with also, on their own, affect an individual’s immune system.
Enhance Resilience: A positive outlook about your life and future can help you get the strength to overcome obstacles and get back to your feet when you fall.
Boost Coping Mechanisms: A positive mind can help you have the right mindset to manage your symptoms, pain, uncertainty, and discomfort and be interested in actively participating in your healthcare.
Foster emotional well-being: Positivity about your condition can improve your ability to manage the associated negative emotions, make you more optimistic, and give you pleasure and satisfaction.

How To Practice Positivity

Here is how you can cultivate positivity as you grapple with SCD and co-morbid mental health issues:

Practice gratitude: Find something to be thankful for, no matter how minor. It can be your supportive spouse, child, parents, friend, academic and career achievements, or even your boss and accommodating work environment.
Accept help from those you trust: Create a circle of people who are always there to hold your hand, encourage you, sympathize with you, and understand your condition without pre-judgments. This can be your family, other people in your shoes, healthcare professionals, and friends.
Focus on self-care: Taking time to look after yourself may do wonders for your mental stamina and energy levels. So, make time for what you like, relax with yoga or meditation, watch what you eat (try to eat a balanced diet), and perform the exercises your doctor recommends.
Challenge any negative thoughts: Learn to replace negative thinking patterns with more optimistic ones. Learn to see any setback as an opportunity to learn and better manage your condition.

Looking Forward for a Better Tomorrow

It’s OK sometimes to feel hopeless and like giving up. It’s difficult to manage mental health illnesses while living with sickle cell disease (SCD), as many who have experienced your road may attest. But there is a glimmer of courage and optimism despite your difficulties. Stay strong, and know that you have support. When things get tough, don’t be afraid to ask for help. Wherever you go, whether online, in your neighborhood, or at work, you’ll always find someone who will understand you and is ready to stand with you.

Also, give yourself time to do things that make you feel good. They can greatly improve your psychological, emotional, and physical well-being. You’re stronger and braver than you think, and each day adds a new chapter to your inspiring story. Continue writing your story of hope, courage, and resilience amid your mental and physical hardships!