The Frontlines of My Life : Dealing with Stereotypes: How A Negative Situation Proved Beneficial

ARREY- ECHI
Posted March 2, 2016 from Cameroon
Arrey Echi

‘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.

Comments 19

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GetRude
Mar 03, 2016
Mar 03, 2016

I am encouraged knowing you did not hide away from the sometimes harsh and inconsiderate comments people throw our way. I am looking up your blog. I know very little about sickle cell, and i really do not want to be one of those ignorant people. Thank you for educating us and sharing your story. I am inspired to speak about one or two of my own experiences because of what you have shared.

ARREY- ECHI
Mar 03, 2016
Mar 03, 2016

Thank you very much GetRude for the kind words. I am glad you feel inspired by this. Please do share your story. Often times, silence as I have come to know kills faster than the situation we are silent about. Thoughtless comments borne out of ignorance are painful to be sure but we need to feel empowered by them if we want to see change. I will be glad to see you stop by my blog. Just in case, here is the link www.joy2endure.com 

Raquel Daniel
Mar 03, 2016
Mar 03, 2016

Wow!

Just yesterday, I was training a group of youth corp members and the issues around sickle cell came. This is a very delicate issue and I commend you for taking a bold step to speak about it.

Sisterly,

ARREY- ECHI
Mar 03, 2016
Mar 03, 2016

Thank you very much Sis Raquel, It is sure a delicate issue due largely to the taboo surrounding Sickle cell. All the more reasons why we need to talk about it.  I am glad more and more people are talking about this. Together, we can break the taboo and make life worthwhile for everyone dealing with  this.

Marie-Claire Kuja
Mar 03, 2016
Mar 03, 2016

Mighty hand claps and a standing ovation to you Arrey.That's what am talking about.Yes rising above the stigmas and taboos and doing what is right which is sharing and creating awareness. There is so much power in sharing Arrey.You may also Start thing about start an NGO to take this to the next level. You know our country like so many developing countries are so ignorant about certain things. They consider so many things witchcraft. Let your life be your message to the world as you walk this path of changing lives.A big Hi Five girl. Well done. Am so proud when sisters surmount the courage to stand up for their rights and those of others. Much love and keep impacting.

ARREY- ECHI
Mar 03, 2016
Mar 03, 2016

Bowing humbling to the hand claps and standing ovation as I move back to my seat after this speech :)). Thank you very much Sis Kujamac. It is a discovery I made that sharing is empowering ever since I decided to go public with my story. Yes, the thought of an NGO is in the pipeline.You are right about our society's ignorance and attributing everything to witchcraft. Thank you for the encouraging words. United, we can!

Nana Amponsah
Mar 03, 2016
Mar 03, 2016

wow-You are an inspiration.

ARREY- ECHI
Mar 03, 2016
Mar 03, 2016

Thank you very much, Nana-Adjoa. He sure is always! Thank you.

Mkandeh
Mar 03, 2016
Mar 03, 2016

Hi Arrey'Echi, What an inspiring piece you have written. I must confess that even though I am aware of sickle cell my knowledge is still too little. I am inspired by your article to research it even further. I know a lot of people suffering from it. Thanks for speaking up. Thanks for exposing the reality of the condition in Cameroon. Prejudice is so common and present in many cultures across the globe. Your powerful piece will inspire another person to start investigating what prejudice is in their own society. Thanks for raising your voice. In sisterhood Me

ARREY- ECHI
Mar 03, 2016
Mar 03, 2016

Thank you Ms Kandeh for the kind words. I am glad this has inspired you to carry on more research on Sickle cell. Knowledge is power. The more knowledgeable we are, the easier it is for us to speak up. You are right, prejudice is a stumbling block to many of us. But we can always start from somewhere and work towards our goal. Thanks again for the encouraging words. Sisterly,

Deb Engle
Mar 03, 2016
Mar 03, 2016

Arrey, you did an excellent job telling your story, and it's exciting to see from the comments how much you're inspiring others with your courage. Congratulations to you for standing up to prejudice and ignorance—and spreading hope through the power of solid information and education.

ARREY- ECHI
Mar 04, 2016
Mar 04, 2016

It is so good to feel your presence here, Ms Debs! Thank you very much for the kind words. The comments are just as inspiring for me. It is heart warming to see how much interest others are showing to educate themselves about sickle cell. Thank you especially for the awesome mentoring work! I couldn't have asked for a more better mentor to work with. Thank you.

Arrey

Mar 04, 2016
Mar 04, 2016
This comment has been removed by the commenter or a moderator.
Precious Nkeih
Mar 05, 2016
Mar 05, 2016

Hi Arrey,

My very own sister, you are one of the most inspiring people I know. I like how you have used your situation to sensitise others. Your blog might not be a trendy blog but it is definitely touching lives and that is all that matters. Keep shining the light on this subject. 

Precious

ARREY- ECHI
Mar 07, 2016
Mar 07, 2016

Thank you for the ever ready kind words of encouragement my own sister. Glad to see you stop by. Touching lives is all that truly matters and with support from people like you, I will keep doing so. Thanks again for always encouraging.

Hannah B
Mar 12, 2016
Mar 12, 2016

Hi Arrey,

Thank you for sharing your story and your bravery with all of us!  It sounds like you have taken a risk in sharing this part of your life, but that you knew it was the right thing to do for you.  I am inspired by your example and your courage!  I hope that you find more strength and connection through the community here at World Pulse.

Best wishes to you!

Hannah

ARREY- ECHI
Mar 14, 2016
Mar 14, 2016

Hi Hannah, Thank you for the kind words of encouragement. You are right it was not easy going 'air' with my lifestory but the responses have so far been inspiring, letting me know it was all worthwhile. Worldpulse for sure is giving me a lot of empowerment to keep speaking out and I am hopeful I will get the support and encouragement even after this all ends. Thanks again, Arrey

Rahmana Karuna
Mar 14, 2016
Mar 14, 2016

Greetings Arrey, Thank you for sharing your story, being vulnerable seems to empower us in unbeknownst ways. You have a gift for writing and i am grateful you are here with us. Hugs Rahmana Karuna

ARREY- ECHI
Mar 14, 2016
Mar 14, 2016

Hi Ms Rahmana, Thank you for stopping by to read my story and thank you for the encouraging words. You are right, sometimes our vulnerability can turn out  to be our strongest assert. I am equally grateful for the opportunity to be here. Thank you again for the kind words. That was cool U picking that out on me :) Yes, I do so love writing, thank you. Hugs