Double Trouble: The Emotional Toll and Constant State of Grief in the Sickle Cell Community!

Imagine this. From the moment you were born, you have been battling with constant, unbearable pain. As you grew older, you had to deal with not only the torment of physical pain but also a variety of stresses such as family, school, financial commitments, and various mental health difficulties like anxiety, post-traumatic stress disorder, and depression, all while attempting to build a career. On top of that, you always have to face the bleak possibility that you may die suddenly, suffer organ failure, or have a stroke.

This should give you an idea of what someone with sickle cell disease (SCD) goes through. If you ever hear of someone with the condition grieving and in pain, the best thing you can do is to provide support without passing judgment, educate yourself on the disease, and refrain from stigmatizing them.

Loss and Grief and Its Connection to SCD

Grief is part of being human. It is an emotional response triggered when something or someone important is lost. The impacts of grief are always profound, starring a whirlpool of emotional responses ranging from frustrations, anger, guilt, and immense sadness to disbelief.

The toll grief takes on your life can extend beyond the emotional realm, often disorganizing your normal cognitive functioning, sleep patterns, and physiological and physical well-being. And things can grow incredibly difficult for someone who has SCD. For warriors, loss and grief, whether it takes the angle of grappling with the unpredictable nature of the condition or facing the harsh realities of medical complications, the effects are unimaginable.

Loss of Health

At the heart of that grief lies the profound impact of sickle cell disease on the quality of life and the limitation on the victim’s ability to engage in daily activities, pursue hobbies and interests, and live an independent life. 

SCD impacts hemoglobin, a vital protein present in red blood cells (RBCs). These cells are crucial in delivering oxygen to the body’s tissues. The normal shape of RBSs is rounded and extremely flexible, enabling them to move effortlessly within blood vessels. However, SCD causes RBCs to stiffen and change shape into a crescent-like or sickle shape. The blood cells have a much harder time delivering oxygen to vital tissues when they become sickle-shaped, which can harm important body organs.

The debilitating nature of SCD often renders the patient engaging in things that others usually take for granted. It is easy to see how this can imprison someone by their own body. The toll it takes on the patient’s health robs them of their vitality, sense of normalcy, and independence. It puts someone living with the condition in a perpetual state of mourning and grief for the rest of their life.

Grief of Losing a Fellow Warrior

If you live with SCD, you will likely have met or interacted with a fellow warrior who has been promoted to glory. Legitimate fears of dying worsen anytime you learn about the death of a fellow warrior. 

Despite a significant 20% increase in life expectancy in the recent past, individuals diagnosed with SCD continue to have a life span that is over two decades shorter than that of the general population. Sickle cell disease ranks first among all causes of death for infants under five, kids aged five to fourteen, and adults aged fifteen to forty-nine. To make the matter worse, recent evidence suggests the actual number of deaths from SCD may be eleven times higher than what’s officially reported.

Whenever word gets around that a warrior has acquired wings, the entire community is profoundly affected. Everyone is left with the question, “Why is this happening to us?” “Could it happen that I’m next?” “Who’s next?” And the sorrow? It penetrates deeply.

The Survivor’s Guilt

According to the National Genome Research Institute (NGRI), it is common to have intense negative feelings if your gene therapy and other clinical trials were successful. You have many questions about why your ailments have improved when your fellow warriors have not been as fortunate. You have regret over the privilege of engaging in clinical trials that are unavailable to others in similar circumstances.

Survivor’s guilt is an emotional feeling that can arise when someone has witnessed or been exposed to death and has stayed alive. Just talk to someone who has lived through a tragic event, like a fatal road accident involving a loved one, and you’ll grasp the overwhelming grief it can evoke.

Consistent with what the NGRI has found, warriors who hear of the deaths of others in their position frequently wonder why they, too, have been spared when others have perished. A person may have debilitating thoughts and flashbacks of their own traumatic hospitalizations and near-death experiences with stroke, Acute Chest Syndrome, kidneys, liver, spleen, and heart problems, among others. It evokes feelings of worthlessness and torture. It becomes difficult to continue your life when you feel less worthy of it than a fallen warrior. It is common for more severe trauma symptoms and survivor’s guilt to go hand in hand. The most common symptoms and signs of post-traumatic stress disorder include trouble sleeping, anxiety, impatience, social withdrawal, rage, migraines, depression, feelings of powerlessness, and reliving the traumatic incident. Talk to any SCD transplant patient you come across, and you’ll hear a wide range of symptoms described.

Relationship Breakdown

One can easily see how a person with SCD can find it difficult to sustain close personal connections. Hospitalizations are a regular part of living with this disease, and the emotional and financial toll it takes may put a strain on even the closest of relationships.

The stigma associated with living with this condition already makes many warriors feel rejected and abandoned. And the loneliness after losing a marriage or love relationship can look like a final confirmation that the universe is indeed conspiring against you. When a relationship ends in tragedy, it can rip the foundations of their sense of security and cast them into a dark sea of hopelessness and uncertainty.

Loss of Employment

People with sickle cell disease have trouble keeping a job because of all the medical issues and symptoms they have to deal with daily. You know, the unpredictable nature of the sickness doesn’t mesh well with the employment responsibilities. As a result, they become chronically absent from work, perform below par, and are ultimately fired. It’s rough because your job isn’t just about the paycheck—it’s a big part of who you are and what you’re about. Therefore, losing it makes you feel like you’ve lost your identity. On top of everything else, thinking about money makes you feel worse about your worthlessness and inadequacy. When you lose your job, it doesn’t simply hurt financially; it also dents your self-esteem and makes you feel worthless, worsening your grief.

Coping With Grief

Feelings of grief, guilt, PTSD, and depression (along with other mental issues you may develop as you battle the sickle cell disease) can overwhelm you. Here are some strategies to help you ease your grief and its impacts:

Work Towards Acceptance

When you lose your job, your relationship breaks, a warrior goes home, or any form of loss, give yourself ample time to process your feelings: wail, grieve, and cry. After that, accept that it has happened. Get up and soldier on and continue fighting until your last breath.

While blocking or avoiding facing reality may seem an effective way to prevent relieving unwanted and distressing emotions, it is not an effective long-term solution. Meditation helps to practice emotional regulation and the acceptance of harsh realities.

Make The Most of Your Life.

Try to have fun and live your life to the fullest. Take advantage of every opportunity to appreciate every moment. Think about your friends and family and how good they feel about your existence. Think of how it would devastate them if they lost you. Whatever loss you experience or feel, practice seeing your life as a gift to enjoy with your loved ones.

Practice Grounding and Mindfulness Exercises.

Grounding and mindful techniques help you focus better at your present moment. It makes it easier to healthily release negative emotions and thoughts without fixating on your grief or harshly judging yourself. Try this when grieving:

  • Doodle, draw, or color.
  • Take a walk, and focus on what you feel, hear, and see while walking.
  • Keep a journal to help you express and process grief

Don’t Isolate from Loved Ones

Receiving emotional support from one’s family and friends may significantly impact how they grieve. Close companions could give you solace by attentively hearing your narratives of sorrow and affirming that you are not alone in your agony.

When you express your feelings, you motivate your loved ones to do the same. Understand that they are probably experiencing grief due to your situation. If you have difficulty in expressing your thoughts and emotions to those who are close to you, you might attempt the following approach:

  • Pursue hobbies and social activities that bring you joy and fulfillment. Do it if you love gardening, hiking, or playing a musical instrument. 
  • Join an online (or in-person) Warriors support group to help you share with those in your shoes.
  • If you are a creative type, express your grief through art, painting, singing, and writing, among other creative activities.
  • Find out if there are any grief workshops or retreats in your area. If there is, it can offer specialized support and guidance as you grieve.
  • Join group activities or classes that interest you, such as yoga, cooking, or book clubs. 
  • If you are religious, activities such as prayer groups or meditation sessions, visiting the sick, singing, and studying Scripture can offer solace and comfort, which can be invaluable during difficult times.
  • Get involved in community volunteer activities. Helping others can provide a sense of purpose and connection while distracting you from feelings of isolation.

Find Professional Help

If none of the above seems not to make a difference in your feelings of grief, talk to a mental health professional. They can:

  • Identify other underlying factors exacerbating or triggering your grief
  • Help you reframe and challenge your negative emotions and thoughts
  • Teach you healthy coping mechanisms

To any warrior courageously confronting the difficult obstacles of sickle cell disease and grief, understand this: Regardless of your challenges, always remember your grit and ability to bounce back. Within the depths of your profound sorrow, there exists the possibility for healing, personal growth, and fleeting instances of happiness. Recognize the power of being surrounded by loved ones, find comfort in the support of your community, and hold onto unwavering hope for a better future.

How you face and overcome these challenges is a source of inspiration for others, shining a light of hope in difficult times. Always remember that within you lies a resilient flame of optimism, ready to lead you through any challenging circumstances.

Helpful Resources for Further Reading:


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