On Changing the Narrative; My Weakness, My Wealth.

Women today face a lot of challenges simply by virtue of being born a woman. These challenges are even more pronounced on women in third world countries who are burdened by a lot of dos and don’ts set up by a patriarchal society. It is even worse if such dos and don’ts are steeped in traditions bothering on superstition.

Being a woman is already hard enough. However, being a woman with an added health condition and a disability makes it even more challenging. Imagine having to fight so to speak, to fit in on three different fronts… being a woman, living with a chronic genetic health condition many still attribute to witchcraft and living with a disability as a result of said health condition where many consider disabled people a burden with no added value to their family or community.

Sickle cell anaemia is a genetic blood disorder which affects mostly people from African, Asian and Mid-Eastern descent though with migration and intermarriages, it is gradually spreading to other countries. In my country Cameroon, about 2-3% of the population suffer from it and most children born with sickle cell die before the age of 5. Unfortunately, despite this, it is yet to be made a public health concern making more people, because of the stigma and taboos that come with the territory to suffer in silence. Many would rather suffer alone than make others know they have sickle cell. Not only is it seen as taboo but something to be ashamed of because those suffering from it are viewed by many as witches and wizards along with their families.

Fortunately, my family gave me all the love and support I needed to thrive. Nevertheless, even with their love and support, I couldn’t escape the stigma and discrimination. I have been called ‘Half die’ by many people and some refer to me as ‘Mumu’ a term often considered derogatory to refer to someone who is deaf or hearing impaired. Today, I make jest of the term ‘mumu’ because I try to twist it around and find humour. Still, I didn’t particularly enjoy being called half die and mumu in my growing up years.

           Changing the Narrative and Finding My Wealth

I love writing as I discovered due to my hearing difficulties which also affected my speech, writing remains the best way to express myself better. One day in 2014, I wrote a post about sickle cell and stigma on Facebook. The goal was just to have a debate on sickle cell and stigma. The negative comments people made on that post made me to realise that sadly, people have such negative misconceptions about sickle cell based on ignorance and wrong social perceptions coupled with the lack of educative and awareness programs about sickle cell nationwide. That was when I decided to speak out. I decided I needed to tell my story or someone else would tell it for me and wrongly too. I decided I need not be ashamed of a life I did not choose and I certainly wouldn’t let my health or society define me. I had to be in charge, make people understand that we are not curses out to ruin our families and like any other person, we also can live happy productive lives, and all we needed was a chance. In a nut shell, I wanted people to hate the condition and not the person and to look beyond the health challenges and see that our lives are more than pains, hospital stays and near death experiences.

Granted, even as these thoughts raced through my mind, I was very much aware that it was not going to be easy. I was aware of the fact that I would be making myself vulnerable by putting my life out there. That notwithstanding, I couldn’t get past all the negative comments and misconceptions many people still had about those like me living with sickle cell and I was not just going to fold my arms and sit quiet… I could either risk it or not, shiver at the vulnerability or decide to turn my weakness into my strongest weapon. Through blogging, online advocacy done under the banner ‘Break The Silence… Be A Sickle Cell Voice’ and workshops, this weakness is becoming my one sure strength, my saving grace in helping people, especially women suffering from sickle cell anaemia and in helping them, I help myself.  Women especially because like I mentioned previously, women are already in a disadvantageous position in society because of being women and add a chronic health situation, you understand that the economic power of women dealing with such is small and maybe non-existent. Empowering women with sickle cell to embrace themselves for who they are I believe, would help them find value in themselves and be willing to join me be strong voices for themselves and others suffering from sickle cell.

It has been heart-warming to see that this weakness has now become my wealth. The feedbacks and support I have received over the years have been impressive. This weakness has now become a source of hope and inspiration for many sickle cell warriors and their families. It is difficult to describe the joy in my heart when I see many people, especially parents change their perceptions about their kids and become determined to love them, support them and give them a chance at life… building their confidence and encouraging them to aim for the skies. Giving off me has been the best enriching thing I have done to other warriors and their families and the community at large and in so doing, I learnt that our weaknesses can either make or mar us. We can either stay ‘poor’ and wallow in self-pity or we can grow rich by daring to break the status quo, challenging and changing the narrative by embracing our weaknesses and seeing it as a source of positive wealth and strength to build ourselves and others up.