The pain that comes with Sickle Cell Disease (SCD) is not only physical but can also be psychological. The frequent hospitalizations and absenteeism from school or work can result in feelings of low self-esteem and hopelessness. In Ghana, mental health is not always regarded by family members, teachers and friends.
In Episode 3 of the award-winning series, AirtelTigo Touching Lives, the International Sickle Cell Centre (ISCC) and AirtelTigo decided to focus on mental health in relation to SCD, by raising awareness about the condition and debunking the negative perceptions associated with SCD in Ghana.
The narrative of a sickle cell warrior
- Doris Benjamin and her two siblings were born with the severe form of SCD (SS genotype). They used to fall ill very often. Their dad did not know the cause of their illness, hence took them to a spiritualist at a young age, to give them some form of protection by putting some marks on their face. Unfortunately, they lost their dad at a tender age. Doris and her siblings were therefore cared for by their grandmother, whilst their mother lived in Nigeria to make ends meet for the family. But once again, they lost another loved one, their grandmother.
- Doris shares how her elder sister Eli fell very sick and needed medical attention. They were living with family members who took care of them, using the items and money sent by their mother from Nigeria.
- Doris and her siblings stood by their sister and cried out to their relatives, asking them to take her to the hospital. But their relatives refused, claiming their sister’s sickness was due to witchcraft. Eli was therefore not given any food, water, or medications. Rather, she was locked up in an uncompleted building and asked to confess to witchcraft before she would be released. Two days later, she died. Eli had suffered from an acute pain episode of SCD but her relatives were oblivious of this.
- Doris and her siblings had to live with the mental trauma of this experience until a year later, when their mother came to visit, and found out how her firstborn child had died. Out of pain, she took Doris and her other siblings to Nigeria and informed them they had no family in Ghana.
- Whilst in Nigeria, Jessica, Doris’s younger sister fell ill and that was how they found out they had been living with SCD all these years.
- Doris opens up in this episode about how she faced severe stigmatization in school so when she was repeated in class after a hospital admission, she got discouraged and dropped out of school. She stated she couldn’t bear the things her classmates would say about her.
- In the midst of all this, disaster struck again, this time round, with Doris and her siblings losing their mother. They had to move back to Ghana and decided to go back to school to complete their education.
- Doris wanted to become a lawyer. But her aunt said she would rather invest in animals than invest in them since they will soon die. These words, Doris says, severely affected her mental health. She says they were like a knife through her heart.
SCD and Mental Health
- Dr Joana Larry-Afutu, a Clinical Psychologist at the University of Ghana and Senior Consultant with the ISCC, stated that a lot of people, especially those in rural communities, associate SCD with spiritual elements rather than medical. Being stigmatized for a condition that one has little or no control over could lead to some psychosocial problems such as low self-esteem, anxiety, a depressed mood, thought of suicide among others. She confirmed that in Ghana, there is an inadequate awareness about SCD.
- Mary Ansong, Founder and CEO of the ISCC stated that pain is the commonest complication of SCD. But the psychological trauma from stigmatization worsens the situation. She stated that research has shown 1 in 3 people living with SCD experience depression.
- The Chief Marketing Officer of AirtelTigo Atul Narain Singh found it ironic that some people living with SCD face discrimination within their own families. He pleaded to Ghanaians, not to label SCD warriors, but to rather give them love and empathy. He was hopeful that this edition of AirtelTigo touching lives in partnership with ISCC will bring about a positive change.
- Ansong concluded the episode by encouraging those that have SCD, to improve their mental health by surrounding themselves with people that love them and understand their condition. She also suggested seeking help from professionals like clinical psychologists. As a society, we need to learn more about SCD to better support loved ones living with the condition
AirtelTigo Touching Lives is a corporate social initiative of AirtelTigo. The Sickle Cell Edition is done in partnership with the International Sickle Cell Centre (ISCC) and will feature medical experts from the ISCC, persons living with SCD, relatives, caregivers and SCD advocates.
Episodes can be found on AirtelTigo’s YouTube and Facebook channels as well as ISCC’s Facebook and Instagram handles.