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The Pain and Shame of Stigma

The struggle to connect and be loved as imperfect beings makes life worth living. However, the shame that arises from rejection makes life miserable, threatens identity and mocks the purpose of life. As a result of the complex nature of human beings, the healing process ought to be all encompassing.  If medications heal diseases, what would heal bruised identities?

Arts in Medicine Africa is pioneered in Nigeria by Sickle Cell foundation and Tender Arts Nigeria, with the aim of complementing the health care system and taking the minds of patients off the injections and numerous drugs, by igniting hope, availing a channel of expression and restoring life through engagements in expressive writing, visual arts, poetry and other art forms.

I recently facilitated a story telling session with parents, caregivers, guardians, and children of people living with the sickle cell anemia. I told them the story of my surgeon in the second person narrative, and I ended the story by saying, “The person I just told you about is me”. The shock on their faces when they realized I had just told them my story changed the atmosphere.  Kunle Adewale, an artist and the creative director of Tender art Nigeria, shared his story as well and declared the floor open for others to share theirs. A young lady who had been looking at me with fine round eyes and afro hair spoke up.

“I would be 30 this year, I have not died, and I would not die soon”

She was struggling to talk, coming out of the shame to tell her story, she shifted her gaze to the roof rather than my face.

“When people see me, they just say, ‘don’t touch her, if you touch her she will just die,’ but I have been living all this while. Why do people like saying evil things?”

This time around, I looked closer to her eyes as she spoke. Her eyes were like clouds about to rain which indeed rained while she used her fingers to wipe it off as she continued sharing her story.

Another woman, spoke up, “I will never tell anyone my son is SS. The people I told, the way they look at him is annoying. I will never never never never try it again’’, she stressed.

As they spoke up, their reactions sent me to two places. On one hand I was with them hearing their stories and lamentations of what people think of them. On the other hand, I was with my mother. She was away for a long time because of an ailment. I had paid a surprise visit to her and I asked her about her health. She was weak to speak but strong enough to tell me that people mock her by calling her an old woman. The ailment seemed to steal her beauty but in my eyes, it did not steal her charming smile and beautiful dentition. She was bothered so much about what people thought, but I was bothered about her health. She had been diagnosed with heart and kidney diseases.

I am supposed to be writing about my story telling session so let us go back to that room.

Another woman continued, “I have just one SS child that is why I give him all the care so that people will not mock him. Do you choose who love? We ought to love unconditionally, right?’’

I was listening to her but I was not sure if it was a rhetorical question.

One thing was clear, they were not bothered about their illness as they were bothered about what people think of them. Stigma remains the epidemic that robs people of their authenticity and confidence.

“We should not be defined by what we are because we did not choose the circumstances we grew up in, we are defined by the choices we make, and we must always choose to be happy.”

My Afro lady, Yemisi, responded, “I will never die while I can still breathe.”

Another young man chorused from the back seat, “I can be whatever I want to be by focusing on the things I can change rather than negative remarks.”

I was glad that they talked their shame away. Yemisi left with a smile. That made my day, and so did the rest.

The children were in their happy world, not bothered about what people thought about them, and I hoped that when they become fully aware of what people think about them, they would not give stigma the privilege of dimming their light.

Has cancer, HIV, sickle cell, or whatever ailment made you feel unworthy? Look into the mirror and see yourself differently, and even though the pains remain, look inwards because we all have an inner strength that would struggle to always win if only we allowed ourselves.

I hope that Arts in Medicine in Africa has come to stay.

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Mirian Chibuzor Azubuike

Chibuzor is the author of The Girl Who Found Water. She is the founder of Haske Water Aid and Empowerment Foundation, and currently doing a Masters in Transnational and Diaspora Studies at the University of Ibadan, Nigeria. She blogs at www.chibuzorazubuike.com.

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