On Changing the Narrative; My Weakness, My Wealth.

ARREY - ECHI
Posted July 5, 2018 from Cameroon
Sickle Cell Workshop Session
I was talking during the Sickle Cell Workshop held last June under the theme " The Socio-economic and pyschological impact of living with Sickle Cell'
One of many pictures of my 'Break the Silence... Be A Sickle Cell Voice' colour awareness campaign.
One of many pictures of my 'Break the Silence... Be A Sickle Cell Voice' colour awareness campaign.: Wearing red/black during June and posting pictures of me daily with something about sickle cell is a way I use to raise awareness about our condition. (1/1)

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.

 

This post was submitted in response to #WealthofWomen.

Comments 52

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  • Tarke Edith
    Jul 05
    Jul 05

    Hello sister Arreh thank you for sharing your story on our plaform sister have trust in God and you shall succeed

  • ARREY - ECHI
    Jul 05
    Jul 05

    Thank you very much, Sis Edith.
    It is always a pleasure sharing my stories here when ever I can.
    We do our part and let God do the rest.

    Love

  • jlanghus
    Jul 05
    Jul 05

    Hi Arrey. Thanks for sharing your bold and inspiring story and lovely photos:-) I can hear how proud you are to have made such a difference in all those peoples lives that you have affected... good job! What a calling you have. Also, I totally agree about our perceived "weaknesses" as being our strengths. The exact things we have always been told are our weaknesses or almost always our strengths. Keep being outspoken and strong and blazing the trail of awareness and change for sickle cell anemia.

  • ARREY - ECHI
    Jul 05
    Jul 05

    Hello Sis Jlanghus,
    Thank you for the encouraging words. Yes, there's a feeling of pride that despite the fear I pressed on and have been able to use my story positively. You are very correct, we have been made to feel weak and caged because we have what society sees as 'abnormal'. However, daring to go beyond social constructs helps us change these same weaknesses into strength. The fight is long but we press on.
    Thank you.
    Much love from Cameroon.

  • jlanghus
    Jul 06
    Jul 06

    Hello there:-) You're very welcome.

    Too true. For all those times I was labeled "too sensitive," and yes, this is one of my strengths and assets.

    Hope you're having a great day:)

  • ARREY - ECHI
    Jul 10
    Jul 10

    Thank you sis. Sensitive people are also very caring and empathetic people.
    Yes, I am. Hope you are too. Wishing you a blessed and fun filled week,
    Love, Arrey

  • jlanghus
    Jul 10
    Jul 10

    You're welcome:-) Yes, I am, thanks:)

    You, too!
    XO

  • Ngala Nadege
    Jul 05
    Jul 05

    Hello sister and thanks for sharing. Its high time people change their perceptions about sickle cell.

  • ARREY - ECHI
    Jul 05
    Jul 05

    Thank you dear Sis Nadege,
    Yes, I agree it is high time for people to change their perceptions about sickle cell.
    Hugs

  • Jafreen Alamgir
    Jul 05
    Jul 05

    Wow! Such an inspiration to empower ourselves!

  • ARREY - ECHI
    Jul 05
    Jul 05

    Thank you sis. To empower others, we have to empower ourselves first.

    Sending you warm hugs from Cameroon.

  • Stephanie Mah
    Jul 05
    Jul 05

    Hi sis. Thanks for sharing your story.
    The way people see or talk about you have nothing to do with you. Only God who created you have a say in your life. If your on the right track, never listeto distraction, for whatever you do people most talk. God loves you.

  • ARREY - ECHI
    Jul 10
    Jul 10

    Thank you sis for reading and yes, the way people see us is always different from the way Our Grand Creator sees us. Having this knowledge empowers us to embrace our being and be us.
    Thank you for the kind words.
    Love,
    Arrey

  • Stella Akinmolayan
    Jul 05
    Jul 05

    I have followed your post and I am so encouraged. Keep your voice high and the sky is just the beginning.

  • ARREY - ECHI
    Jul 10
    Jul 10

    Dear Sis Stella,
    Thank you and glad to know this inspired you.
    I sure will keep soaring.
    Love,
    Arrey

  • Ngwa Damaris
    Jul 06
    Jul 06

    Etchi- Arrey...I am happy you found you wealth in your condition.When we speak out, we help ourselves and each other.I think you should meet veronica Ngum as she is running an NGO on impaired Women, you guys would go places with your vision of lifting up impaired women.Once more I am happy to read from you :)

  • ARREY - ECHI
    Jul 10
    Jul 10

    Dear Sis Damaris,
    Thank you for reading through and for the kind words and suggestions. You are very right on speaking out we help ourselves and others. I would check her out. The name's Is Arrey- Echi not Etchi-Arrey ;)
    Thanks again
    Love and hugs.

  • kyla
    Jul 06
    Jul 06

    Hi Arrey, thank you for your willingness to share your story, you have clearly helped many women and their families already and there is no doubt that as you keep sharing you will positively impact many more.

  • ARREY - ECHI
    Jul 10
    Jul 10

    Dear Sis Kyla,

    Thank you for stopping by and for leaving these encouraging words. My fervent wish is to impact as many people as possible and change their perceptions a day a time, a campaign a time about Sickle Cell Anemia.
    Love from Cameroon,
    Arrey

  • Olubee
    Jul 06
    Jul 06

    Dear sis. Your story is a very inspiring one. Woman are disadvantages and marginalized in the society, and with a sickle cell!!!!!!. But you have shown the world that their is ability in disability and the very weakness people see,is the actual strenght domicile in an individual .Thanks you for sharing ,keep pressing on sis.The sky is your starting point.
    kisssssss.

  • ARREY - ECHI
    Jul 10
    Jul 10

    Dear Sis Olubee,

    Thank you very much. Very encouraged by your words. Yes, there's ability in disability because disability is simply being ably different and in embracing our perceived weaknesses, we discover our hidden strengths. I sure will keep pressing. Thank you.
    Warm hugs and love from Cameroon,
    Arrey

  • Obisakin Busayo
    Jul 08
    Jul 08

    Dear sister,
    You are such an inspiration! Thank you for sharing your story with us. Keep soaring and moving higher
    Warmest Love

    Busayo

  • ARREY - ECHI
    Jul 10
    Jul 10

    Dear Sis Busayo,

    Thank you so much. Your words are truly encouraging. I sure hope to keep soaring and moving higher.

    Warm love and hugs,
    Arrey

  • Tamarack Verrall
    Jul 11
    Jul 11

    Dear Arrey,

    What important work, and powerful message. We stand on such firm ground when we speak from our own experience, and you are undoing discrimination on any levels. Your story is such a beautiful weave of how you have stood strong in the face of profound ignorance and dangerous attitudes, and of how your work is changing the lives of so many. May the wind be strong beneath your wings dear sister.

    With love in sisterhood,
    Tam

  • ARREY - ECHI
    Jul 12
    Jul 12

    Dear Sis Tam,
    Thank you so much for the powerful encouraging words. You are right about standing on firm grown when we speak from our own experience even if everyone around consider it slippery. Thank you. That wind is strongly needed to keep the wings soaring.

    Much love from Cameroon,
    Arrey

  • leila Kigha
    Jul 12
    Jul 12

    Etchi dear, thank you for sharing your story. I love how you took on you to change the narrative. If you don’t, others will do so for you. Keep on keeping on sis, one person at a time.

  • ARREY - ECHI
    Jul 12
    Jul 12

    Dear Sis Leila,
    Thank you very much. You are right we either change the narrative or someone else will do it for us and probably wrongly too. One person a time the change will come.
    Btw, the name is Echi :)

    Love from the town of seven hills.
    Arrey

  • AGNES TUMASANG
    Jul 12
    Jul 12

    Thanks my sister

  • ARREY - ECHI
    Jul 16
    Jul 16

    Thank you too for reading, Sis Agnes.

    Love, Arrey

  • Mercy Kusi
    Jul 15
    Jul 15

    Hi Arreh congratulations for rising above the stigma of sickle cell and for being such an inspiration to others.Keep up with the marvelous work.

  • ARREY - ECHI
    Jul 16
    Jul 16

    Thank you, Sis Mercy.
    I sure will keep on keeping on.

    Warm hugs,
    Arrey

  • Sister Zeph
    Jul 16
    Jul 16

    Dear Arrey

    Thank you for sharing the story, people get angry or they are negative because they do not have awareness and you are the one who is giving them awareness this is where change starts, you are a change and you are becoming a source to save many lives because you are raising your voice despite all the obstacles, bless you

  • ARREY - ECHI
    Jul 16
    Jul 16

    Dear Sis Zeph,
    Thank you for these beautiful words. You are right people usually act angry and negative because of ignorance. Sometimes it may be overwhelming to deal with the negative vibes, but keeping it in mind they lack accurate knowledge about a situation may well continue to help us go slow and steady.

    More blessings to you for being a strong voice to the vulnerable in your community.

    Warm hugs always,
    Arrey

  • Urmila Chanam
    Jul 16
    Jul 16

    Dear Arrey-Echi,

    What a warrior you are, my sister! You make my heart swell with pride of how you have turned your condition as your wealth. March ahead my sister.

    Love and hugs
    Urmila Chanam

  • ARREY - ECHI
    Jul 18
    Jul 18

    Dear Sis Urmi,

    Thank you for the kind words of encouragement. It has been a great pleasure knowing you and being inspired by how you make use of your wealth to empower women. I sure will keep marching ahead, Thank you.

    Warm hugs and love,

  • Adanna
    Jul 16
    Jul 16

    Dear Arreh,

    You are a strong woman who is breaking the silence for those with sickle cell.

    You are doing an amazing work!

    Thank you for being a source of hope for many sickle cell warriors and their families.

    Love,
    Adanna

  • Adanna
    Jul 16
    Jul 16

    Dear Arrey,

    You are a strong woman who is breaking the silence for those with sickle cell.

    You are doing an amazing work!

    Thank you for being a source of hope for many sickle cell warriors and their families.

    Love,
    Adanna

  • ARREY - ECHI
    Jul 18
    Jul 18

    Dear Sis Adanna,
    Thank you very much for the encouraging words. The silence and taboos around sickle cell had to be broken. I am just happy I found the courage to start the ball rolling and I pray many more would join me. Thank you again,

    Love and hugs,
    Arrey

  • Gisele Beer
    Jul 18
    Jul 18

    Weh ma sister.I understand what you are going through,especially in a country like Cameroon, half die? U can imagine the pain.Thanks for standing out and being a voice to the voiceless,sickle cell doesn't mean you will die young.Keep giving others hope.loads of hugs from me to u.

  • ARREY - ECHI
    Jul 18
    Jul 18

    Thank you very much, Sis Gisele. Speaking out is a way to demystify the stigma, discriminations and taboos associated with sickle cell. It has indeed been empowering to me and those I have been privileged to touch to join me speak out. For sure, having sickle cell doesn't mean we will die young all the more reason to change the narrative by speaking out.
    Much love and hugs

  • Nanda Gaikwad
    Jul 21
    Jul 21

    Very good

  • ARREY - ECHI
    Jul 27
    Jul 27

    Thank you very much.

  • Reena Saxena
    Jul 21
    Jul 21

    Change the conversation, not only the narrative. Start voicing your expectations, and let people know what you want, not just need.

  • ARREY - ECHI
    Jul 27
    Jul 27

    Thank you. You are write, we need to change the conversation but when you are dealing to taboos, stigma and a very superstitious community, I think we start by changing the narrative and perception as we work towards building positive conversation trends.

  • sarah_2
    Jul 31
    Jul 31

    My daughter was diagnosed of sickle cell anaemia too..
    And I know how it feels my sister.Not forgetting the stigma attached to it.
    But believe you me,together with pulse sisters like you and me,we change all these things and make the world a better place. kEEP IT UP
    Sarah cares

  • ARREY - ECHI
    Aug 03
    Aug 03

    Dear Sis Sarah,
    Courage warrior mum and courage to your warrior daughter. It is truly not easy but as you rightly said, we can decide to change the narrative and with a support system of sisters like the Pulse, we will get there. Keep going and keep your daughter fighting!
    Hugs.

  • Hellos, Sister Arrey,

    Your bravery is admirable. I love you already!

    I may not have sickle cell but I have been battling with depression for most of my life. I have been quiet about it because of the stigma, and being told that it is of the devil.

    My nonverbal 4-year-old son has special needs. Reading your words, I am inspired to be his voice. I have so much weaknesses, that means I have so much wealth! Thank you for this perspective. I love it. I love you.

    Hugs!

  • ARREY - ECHI
    Aug 03
    Aug 03

    Dear Sis Karen,
    love you too and sending you tight hugs.
    You are a strong woman and I admire you for speaking out. That's the mistake many make in writing off depression. Glad you are speaking out and even more happy you are standing for your son with special needs. You remain is first advocate and always remember he is just ably diffferent.
    keep going a day a time and keep discovering your wealth in your weaknesses.

    Warm hugs and love from Cameroon.

  • Tester McTesterson
    Aug 21
    Aug 21

    Great Job :-)

  • ARREY - ECHI
    Aug 24
    Aug 24

    Thank you!

  • Ife_Agboola
    Aug 29
    Aug 29

    Awesome!

    I have only heard a few people speak out about sickle cell anaemia. It is still shrouded in a lot of mythology.

    The work you are doing is amazing.

  • ARREY - ECHI
    Sep 07
    Sep 07

    Dear Sis Ife,
    Thank you very much.
    Yes, it is still spoken in whispers. That is why we need to keep talking to break the silence.
    Thanks for reading.