As September is sickle cell awareness month, I want us to hear from other sickle warriors and read about their struggles and how they are overcoming their health challenge. Enjoy the story below.
My name is Funmilola Favour Anjorin. I have read many stories on this column and each time, I could relate with them. This is because I have my fair share of pains that unfolded in my life as a result of having sickle cell disorder.
Earlier in life, though I was always skipping school because of one crisis or the other, my parents tagged it “rheumatism.” This was because of my dad’s arthritis and rheumatism. Subsequently, a native doctor came to do incisions on my joints, chest and back with the assurance that the pain wouldn’t return. Probably because I lost some blood during the incision process, I went into crisis three days after, and the crises continued.
I came to the knowledge of my condition when I was about 17 years. I enrolled for a pre-degree course at a Nigerian university at 16. My episodes of crisis increased, probably because of the new pattern of academic stress. Before pre-degree, I had about three episodes of crisis requiring hospital admission in a year but within a six-months period of pre-degree, I had about four episodes and was always visiting the university health centre. The future looked bleak as if I didn’t have the strength to go through a university education.
After my pre-degree, I visited my sister who, was studying for a master’s degree at the University of Ibadan, Oyo State. Once again, I fell ill, she being the inquisitive type, said, “I can’t join everyone in this assumption about you and rheumatism. There has to be a reason for all the constant pain and sicknesses.” She took me to the University College Hospital, Ibadan. After some consultations, I was asked to do a genotype test. Days later, I went to the haematology laboratory for my result.
I collected it and on the paper was written, “Electrophoresis reveals heamoglobin SS.” I stood in front of the laboratory scientist who gave me the result and looked at it as if there was a mistake. I read the result again and again and stared at my name on it, “Olufunmilola Anjorin.” I stepped out so that she could attend to other patients. I remember how I stood in front of the laboratory, leaning against the rails and sobbing silently. I summoned the courage to call my parents and told them the news, their responses showed how shocked they were. My father said, “Haaa!!!,” He didn’t know. They didn’t know. No one in the family knew.
Still leaning against the rails, I sobbed the more. I couldn’t stop the tears. This is going to change everything, I thought. “Now it has a name. Things are different now; how do I forge ahead? How do I face my future husband and tell him there is something different about me? When anyone randomly asks what my genotype is, how do I respond? How do I explain to my unborn kids that their mum is different and that is why she is always down with pain? The questions kept coming.
Consequently, the more I thought about all of these unanswered questions, the more I gradually slipped into depression without knowing. I hated the world, how could I be the only one with sickle cell disorder among six children? Why should it be me? At different times, I was offended in my parents. How could they have done this to me? How could they give me such a life? I was desperate for answers and gradually shutting down on the world.
The truth of God’s word started coming to me and I embraced it so much so that I woke up one day saying to myself, “Olufunmi, you have to pick one of two options. It is either you keep getting depressed and then wake up one day to commit suicide or you embrace this as a story you can impact on the world with.”
You know what they say, “Our most defining purpose in life might be revealed out of a devastating pain.” My pain built courage in me and I was ready to face the world. At that point, I thought I had all the answers, until life started shooting various shots at me.
I was bright, smart and beautiful. A young lady doing well in academics and other areas of life. However, each time my significant other hears genotype, ‘SS,’ the story changes. I thought it had to do with just one individual until it became routine. I had relationships and I was given all manner of excuses when the relationships ended because of my genotype. I was told words like, “My mum asked if it is only a sickler I thought of marrying out of all the beautiful and strong girls out there.” I thought this was a joke until I started counting numbers.
I finally met someone who didn’t mind and was ready to take it on. I was already in love with him and then another shot came. He did his genotype test at the university and he was given a result showing AA. I insisted on him repeating it before we started the wedding plans. I then received the shock of my life. The result came back as genotype AS. I was in denial and asked him to repeat it at a college hospital where I worked and it was AS again. I had to decide not just for myself, but for the coming generation. No child deserves to go through the kind of pain I experience each time I’m in crisis. I had two options: it was either I succumbed to the pity party or I stood up to take my place in the world. I began to think of ways to clear the misconceptions about sickle cell anaemia, by educating people about the disorder, raising advocacy on early genotype testing as well as encouraging people who have been despised and stigmatised in different ways.
Then the thought of “VICTOR and not VICTIM” came to me. I created a YouTube channel and a podcast. The idea behind it was, it doesn’t matter what the world calls or names warriors, they are victors. And then I found my purpose, to say to warriors in different nations of the world that they are not only normal but unique, and that each person should learn how to celebrate their individual uniqueness. I want to raise a strong awareness that they can find super abundant strength even in weakness.
If you would like to get in touch with me about this column or about SCD, pls do so on: t.dehinde@yahoo.com and do visit my blog: •www.howtolivewithsicklecell.co.uk.
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