‘Marry someone who is a walking corpse, knowing they will drop dead anytime soon? No way!’
Over a period of time, I have successfully run an interactive column in a popular Facebook group, 1001 Reasons. This column, ‘STIGMA,’ was aimed at bringing up situations considered taboo in our communities, which has led to the stigmatization of particular groups of people. Topics aimed at sharing ideas and, if possible, changing mindsets were brought up for discussion.
One topic was Chronic Disease Sufferers. I used Sickle Cell Disease as an example. My simple illustration of a girl losing her potential mate once he learned she was a Sickle Cell patient set the ball rolling—and what an eye opening debate it was! Unbeknownst to most of the participants, the moderator of the post—yours truly—is also a sickle cell patient. It was hard to moderate that particular post, reading people’s narrow-minded views about sickle cell disease. I had to remind myself it was a debate, but the views exposed that day spoke volumes.
I read comments like ‘the best I can offer a sickle cell patient is my friendship, and no matter how much I may love him/her, once I know they are sickle cell patients, it is over.’ This gives the impression we are living life with a permanent rose, ready to meet our Maker by referring to us as ‘Walking Corpses.’
It was hard accepting that, with all the information available today, people could still spew such ignorance. I had previously been encouraged to blog but I kept dragging my feet. Suddenly, after that debate, I felt a strong urge to blog. I felt a burning desire to raise awareness on this condition because sufferers were being unjustly stigmatized and stereotyped. Being a woman is difficult enough without adding sickle cell to the equation.
In addition to being called walking corpses, some people with sickle cell have been called witches and wizards, out to ruin their families. It is even worse seeing kids in dire need abandoned by their parents who refuse to educate themselves about their children’s condition but vehemently stick to the idea of witchcraft. Sadly, the failure of the Cameroonian government to make this a public health concern and the noticeable lack of advocacy groups and statistics on the number of people born with or living with sickle cell disease in Cameroon adds credence to this narrow-minded view.
There was a need to raise awareness. I had my story as a reference point, yet I felt my heart sink into the pits of my stomach as I wondered what could happen with putting my story out there. Would people distance themselves from me once they knew they were dealing with a ‘walking corpse?’ A ‘half die?' I hate those pitying looks and only a few close ones knew about my condition. Nevertheless, someone had to speak up. I mustered the courage, pulled my heart back into my chest and went viral with my story in a bid to raise awareness. I took up the blog challenge and through the ‘Warrior’s Diary’ I tell my story. It is not the trendy kind of blog. Neither is the name anything fanciful, but there’s joy in endurance. The ball was set rolling and my life story became more or less an open book. It is an uphill task but a negative situation is proving to be very beneficial. I could have easily scurried into a hole but I took the bull by the horns and ... added my tiny voice to the other voices on issues like this.
When I write a blog post and I read comments like ‘Thank you for educating us about this. It is an eye opener changing views on sickle cell,’ it makes it all worthwhile because I and, by extension, sickle cell patients, are slowly moving from ‘walking corpses’ to inspiring others.