“Sicklers”, “attention seekers”, “drug chasers”, “abusers” are some of the words used to describe us. What people fail to realize is that we are none of those. We are Warriors, we fight battles each and every day. We live with the challenges of sickle cell, fight battles that are emotional, psychological, socio-cultural and political. Even though the playing field is unequal, we remain steadfast in our determination to win in this game called life.

Being the third child in my family and the first to survive beyond childhood, it wasn’t until my early adolescence that it dawned on me the profound effect that this condition would have on my existence. As a child, I had my fair share of troubles. I was small for my age and this led to constant bullying, being prevented from joining in group activities and the constant eyes of worried adults scared that I was on the edge of pain, another crisis or even death. It was a heavy burden that no child should endure.

Sickle cell disease is not a mystery, a hopeless condition or a death sentence. It is a condition wherein the red blood cells within the blood that carry oxygen, deform into a “sickle” shape. This shape prevents the blood cells from flowing properly throughout the body and leads to clumps of red blood cells that jam up in the wall of the blood vessels. When this happens, the precious oxygen that the red blood cells are carrying doesn’t get to the tissues, causing fatigue, extreme pain and even devastating effects like organ damage, strokes and sometimes death. To compensate, the body’s bone marrow increases its production of red blood cells but it can’t keep up with the demand, leading to one of the most common symptoms – anaemia.

Everyone living with sickle cell fights daily to live a normal life – to have a good quality of life and a good length of life. We want to explore the world around us, have fun, engage in sports and other activities but we are sometimes cruelly reminded that we are not like everyone else. A little strenuous exercise can lead to fatigue, excruciating pain which can lead to hours, days and even months of hospitalization. These are enemies that we fight daily.

Everyone wants to have great friendships and beautiful relationships but with sickle cell, others fear becoming close to us because of myths and assumptions. Romantic partners walk away, scared that the love won’t be strong enough to stay committed to the relationship. Relationships fall apart when others are faced with the reality of our pain. Do we continue with loving others if that means someday, having children who will suffer from our conditions? Are we worthy of being loved, cherished and befriended? Will we find others who will see the beauty in us? These are the enemies that we fight daily.

Everyone wants to succeed in life – to attain educational achievements and career goals but how can that be developed when people around you believe that you aren’t strong enough or intelligent enough to do anything? When others doubt your God-given abilities simply because of sickle cell? When others tell us that we are using our chronic condition as an excuse to get out of responsibilities or to depend solely on others, it hurts us. It weakens us. Sometimes it becomes a mantra that we, unfortunately believe, and eventually, it paralyzes us. When we don’t have the energy to go to school, work or keep up; it doesn’t mean that we aren’t capable. It just means that our paths are different. It doesn’t mean that we won’t live long and well, it just means we live differently. These are the enemies we fight daily.

We want to be protected by governmental laws and regulations but who will fight for us when our supervisors unfairly discriminate against us in the workplace? Who will fight to ensure that there are favourable working conditions for us as well? Which policies will subsidize treatment for the management and treatment of sickle cell disease or ensure the availability of emergency centres and specialized clinics around the nation? When the prevalence rate of sickle cell in Ghana is nearing 25% – nearly a quarter of the population – why aren’t there leaders who recognize the situation and with compassion and care, acknowledge and address the plight of their people? These are the enemies we fight daily.

Everyone can fall sick with malaria, gastritis, diabetes and hypertension but not sickle cell. We can all have different conditions and illnesses that affect our lives but those with sickle cell are isolated, ostracized, demeaned, stigmatized and discriminated against FOR NO GOOD REASON. We are attacked overtly and subtly with myths that make our lives difficult. Society looks down on us even though we suffer from chronic conditions just like others. The milk of human kindness, patience, social support, encouragement, understanding and comfort flows to others but it does not flow to us. These are the enemies we fight daily.

We are warriors. I am a warrior. Despite all these enemies, I stand here today as a warrior who has attained a diploma in mental health nursing, a BA in Psychology and MPhil in Guidance and Counselling. Despite the hurdles and battles, we fight hard, strong and determinedly with endurance to attain the calling of the high mark before us. We do our utmost. We tell you this. While sickle cell is a chronic, unpredictable and sometimes debilitating illness, with love, communication and understanding it doesn’t have to be an imprisonment. In this world where we are all trying to live our best lives, recognizing the needs of those with sickle cell doesn’t lessen our ability to live well. Only in acknowledging a thing can that thing be understood and worked with. It is the same with sickle cell.

Sickle Cell Disease is not a death sentence! It is not imprisonment. It is a chronic illness that can be managed to ensure that we live fruitful, fulfilling lives.

I am a Warrior -a proud Warrior living with Sickle Cell disorder.

 

Writer: Emmanuel Kofi Danso
Mental Health Nurse & Counselling Psychologist