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SPECIAL REPORT: Coping with Sickle Cell Disease (SCD), and Intimate RELATIONSHIPS (A MUST READ!!)

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As the Month of September, which is known as Sickle Cell Awareness month is approaching, there is a need to address the issue about people living with sickle cell

Many persons with sickle cell disease have had negative experiences with personal relationships. People who have sickle cell disease struggle greatly with rejection in a variety of contexts, including those of family, education, employment, and romantic relationships.

Living with sickle cell herself, Olufunmi Anjorin has opinions on this situation that impacts others with the disease. Read her analysis of it now.

 

Sickle cell and close relationships have been on my mind for a very long time, but I wasn’t sure I was prepared for the societal noise, the comments, or the bias in people’s hearts. But that shouldn’t stop me, I reasoned.

I want to discuss the drama surrounding sickle cell disease.

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A lot of people living with Sickle cell have had hurtful experiences in the area of intimate relationships. People living with Sickle cell have a great deal to deal with, in various areas of rejection, namely, family, school, employment and intimate relationships. Olufunmi Anjorin, who lives with Sickle cell, has her views about this predicament that affects people living with Sickle cell. Let’s read her take on it.

It’s been on my mind to write about Sickle cell and intimate relationships for a very long time, I just wasn’t sure I was ready for the societal noise or the comments or bias in the hearts of people. However, I thought, that shouldn’t stop me.

In my honest opinion, I’d say I’m not sure any other human condition has as much negative stigma as sickle cell disease does. Thinking about it from my vantage point, I am aware that it is a biased view. Nevertheless, I discovered that this viewpoint is shared not just by me but also by the collective. I can confirm that many of us have encountered this unsettling circumstance.

I want to talk about Sickle cell and the drama that arises with loving relationships. I feel compelled to write because the pattern never stops, and it doesn’t seem like it’s ever going to stop. What is it with this unfavourable stigma around the disorder called Sickle Cell Disease?

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In my candid opinion, I would say I am not certain any other human disorder carries such a weight of adverse disrepute like Sickle cell does. I know it is a one-sided view, thinking about it from my perspective. Regardless, I found out it was not just me but the collective, who have this same point of view. I can say that a number of us have had our fair share of this ominous experience.

My happy moment was sometime ago. It seems prince charming, God-ordained, revelation receiver and lover boy was finally here. He gave me all the attention necessary regarding my beauty and brains, my small achievements, and my significance in my little sphere.

I could not believe it; I was so happy. He was my number one fan and he seemed so perfect, to the point where I thought, “Let’s take a deep breath and open a bottle of champagne and rejoice because the one I have long awaited is finally here.” The mushy feeling was there, and he ticked almost all the boxes.

He must care for me, yes, he must be a sincere lover, yes; he must be proud of my wins, yes. The spiritual space box was also ticked – a lover of God, oh yes; a worshipper, absolutely yes; a giver, yes, he was.

Then the real gist came up. It was the point where he said, “I didn’t even ask about your genotype. I am a confirmed AA and I believe I can marry anyone,” and I replied, “Great! You can marry even a Sickle Cell warrior?” Now, my guy went mute.

After some seconds he said, “How could you even think of that? When I said I can marry anyone I mean it doesn’t matter if the person is AA or AS.” Oh! My bad. My heart sank! What was he trying to say? Did he mean to say I did not have a chance with him or in his life just because I came with a genotype I didn’t get to choose for myself?

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My heartbeat began to palpitate fast. I was immediately heartbroken. He soon noticed my silence and said, “Why are you quiet? You haven’t answered my question. Though it doesn’t really matter since I am AA.” To him, it didn’t really matter. However, to me it mattered a great deal. I had picked up what was of essence in the conversation, which was the fact that I could not matter to him once he knew my genotype.

I knew I didn’t stand a chance in his life because I am genotype SS. And maybe not only in his life but in so many other people’s lives as well, just because of the way society paints this Sickle cell disorder.

Back to my story, soon Bobo noticed my ‘verbal absence’ from the conversation and asked where I had travelled to in my thoughts. I wanted to lie so we could keep talking, but then I thought I should not hurt myself further. The earlier I addressed this issue, the better it would be for both of us. I said, “What if I am genotype SS?” He laughed hysterically.

When he noticed I didn’t laugh along with him, he paused and said, “Please answer me, what is your genotype?” I responded “I am genotype SS.” And this time, there was no laugh, but a long silence and he said, “Why would you be SS?” I said, “I don’t know, I didn’t get a chance to choose, maybe I would have chosen AA as well.” He said, “It’s okay, no problem. We will talk tomorrow.”

Tomorrow came, I didn’t get the usual “good morning, babe” vibe and I knew yet another one is gone. I didn’t choose to be born with genotype HbSS. I was never given a chance to choose, so how is it ever my fault? He claimed to be busy afterwards which wasn’t new; that had been the trend over the years, and I was now used to it.

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I wasn’t going to write about this until a younger lady who is equally a Sickle cell warrior shared her experience with me. This time, her ex didn’t just leave, but left her hurt and terribly wounded emotionally. He left after the second episode of vaso-occlusive crisis the guy witnessed. He was AA genotype and blood group O+ and was asked to give blood the first time, and he did.

But the second time she had a crisis, he refused to give blood. “I’m sorry, I can’t donate for you this time or ever again. I am too young to sign up for this, there are better options for me outside and I can’t just settle for a weakling and soon-to-die individual.” Wow, that was nasty to say to someone on a hospital bed.

HERE NOW ARE MY QUESTIONS?

Who is the offender?

The sickle cell carrier or the parents?

Or society that has decided to make a big deal of Sickle cell disease?

What I fail to understand, with society at large, is “Is sickle cell still a blood disorder or now a plague?” I began to wonder and genuinely request answers to my questions.

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Olufunmi Anjorin is a Sickle cell advocate. Her social media handles are ‘Victor not victim.’ She has her Youtube channel, where she interviews people living with Sickle cell.

Here Instagram handle is http://@Victornot_victim and you can also reach her on @Victor not Victim, on her Facebook channel.

If you would like to get in touch with me about this article or about Sickle cell, do so, via email: [email protected] and do visit my blog: http://www.howtolivewithsicklecell.co.uk.The e-copy of my book on Sickle Cell – HOW TO LIVE WITH SICKLE CELL is available for purchase on http://www.toladehinde.comand if you want to purchase a paperback version, it is available on Amazon.

 

 

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Written by Ruth Semilore

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