MILLION DOLLAR QUESTION 1A

ImageHa! So a while back, I asked if you will date/ marry a person living with sickle cell disease, assuming you were AA, ie, did not have the disease or trait?

The responses were as diverse as the different haemoglobin genotypes in sickle cell. So there were those who didn’t mind at all. Mostly my medical school colleagues.  I found that interesting. They know more about sickle cell than the average person. They know all the adverse health effects and still don’t mind. Wow! Case in point, this guy William, he is actually AA, his girlfriend has sickle cell disease, he really doesn’t mind. His final year project was sickle cell related. Wow! That is one blessed lady.

Then, there was the absolutely not! This, from a person, who like myself has sickle cell disease. Her point? Well, having lived the sickle life, much as this decision will not result in offspring with sickle cell disease, just the trait. She still wasn’t having it. Her grandchildren, yet unborn, were her focus. No, her own children will not have the disease, but, since they will be bearers of the trait, their children could. This responder was just not willing to subject her future grandchildren to the pain she has borne. Wow! How altruistic! My issue with this is? By this, is that to say people with sickle cell disease should not bear children?  At best this children will have the trait and at worst, the disease. Either ways, generations down the line may be affected. So what now? Survival of the fittest? Lets prevent them from breeding so the whole sickle cell disease thing can be done away with? Hmm

Then there are those who think; what sickle cell? ‘YOU PEOPLE’ fuss too much. Let us be already. People with sickle cell are just like everyone else. They are not sick. They just like to play victim. Of course I’ll date the person, hell I’ll date anyone I want. They act like there is nothing wrong. Expect their partner to do everything like everyone else. Except, when things get real, when the person starts having vaso-occlusive crises, or has several hospitalizations or much later when they get married and their kids have the disease too and start suffering. They flee. Because they were in denial from the very beginning.

This is the thing, being a person living with sickle cell, I would love someone who is AA to date me, will love to have it end in marriage. ‘I ain’t gonna settle for just anyone cus they are AA. U gots to be a complete package.’ I need someone who accepts me for who I am, understands that I am not like everyone else. I strive to live normally, but there are bad days. Pain may be bad sometimes, I may have a limp occasionally, but that doesn’t define me. There are times when it seems like am not taking care of myself, not taking my drugs, missing appointments and such. What I need then, is support, not judgment. Love and care. I need a person who can love me enough to be with me when am in excruciating pain and on admission, when I have doctors sticking a thousand needles into me. I need a person who can be strong for me. And not be scared about seeing me in pain. I need a person who can understand my fears about the future. My health, kids, and such, and not sweep all things sickle cell under a giant carpet. If you can’t handle that, beat it!

So, would I date a person who has sickle if I was AA? Definitely. Why? For one, human. We are all human irrespective of whatever disease.  I get it.  Do you? Can you? The thing is, to know this the first stage is knowing your own genotype. Get your heamoglobin electrophoresis test done.  The discussion is different if you are a carrier (AS, AC…) or have the disease (SS, SC…). Other things come into play. The first stage though, is getting the test done.

Actions really do speak louder than words, the real issues start when your partner with sickle cell gets sick. Just be strong for them. Show all the love you can. If you cannot though, you are better of letting the person be, than being an additional stress in their life, because as you know, stress is one of the greatest things that precipitates crisis in people with sickle cell.

Regards,

Sefakor-Enam.

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