My name is Dotun, 5th and 1st born of dad and mum respectively. I’m a 28yr old registered nurse living with the sickle cell disease. When Phaozee came to me to tell her more about SCD, I smiled and wondered what there was to tell. I never saw this condition as something so big because I naturally do not see a reason to brood over things that cannot be changed. Of course, as a child I understood my limitations and felt bad about it but I got over it eventually.
As a nurse, I care for patients as due. As someone that has the same condition, I see it as a phase and I'm like "you'll get over it soon". Pain is described as what the patient says it is and so it should be treated as such. Rehydration, rest, and medications are some of the lines of management.
As a kid, playing football and engaging in some other activities with friends was fun but I discovered others could go out to repeat the same activities the next day while I remained on the bed for days rolling in pain. I knew there was a difference between me and other kid. Mum made me feel different amongst siblings, though unconsciously. The “don’t do that, you can’t do this” situation made me feel different. She lost 2 children, 1 to the condition and the other before the genotype could be ascertained. I played with friends to any level I wanted to, I might not just be able to get up the next day. I have had days too that while playing I go into crisis. Growing up, I missed school on many occasions but it never affected my grades and scores. I had a way of making the top three. As a result of my good performance, there was less chance for discriminations amongst my peers. In my junior secondary 1 and 2, I have had to struggle to remain in the 13th, 12th and 11th position on some occasions but this wasn’t because of my condition.
Post Secondary education, yes it affected because I felt relaxed like “I really need not struggle, I have my mum”. That got to my head, I didn’t take exams seriously, I failed JAMB a couple of times and when I eventually had the opportunity of gaining admission into a federal polytechnic outside Lagos, I wasn’t allowed to go. I had to settle for a college of education which I was going to from home. It took a while before I realized that I owned my life and mum would not be available forever.
Did I ever blame my parents? At the peak of some painful crises, I may have done so unconsciously but at some other fun times, my mum and I sometimes joke about that. I say stuffs like: “you have used the love that was worrying you to cause ‘wahala’ for me”. I had the first crisis when I was 4, according to my parents and I have had crises of varying degrees. I don’t know which I could call the worst but really, I don’t remember the experiences. I guess for me, the memory only lasts as long as the pain. *smiles*.
In my early days in school, precisely, primary and junior secondary school days, I was bullied, I mean bullied in the real sense of the word. I have yellow eyeballs that change from light to deep based on my state of health but never been white. I had a very big tummy and my growth was stunted. I remember a particular girl that called me ‘Oloju Green’ i.e. green eyeballs.
Based on academic performances and consistency, I was made the Head boy in secondary school but it was hell. Even junior students threatened to deal with me basically because of my stature.
Looking back, I see how normal it would have been for primary and secondary school children to deal with such funny look especially when there was no form of education that tended towards that.
Talking about relationships, my self confidence was missing. I couldn’t walk up to any girl, my size and tummy didn’t let me and some that I was able to talk to just saw me as a joke. I didn’t see that as discrimination at the time. It’s in the past now anyway.
I have never had difficulty talking about this condition. I mean, I never hid it from people around me. I have built a support system, made friends and I have contacts of people living with SCD that rolls into twenties if not more and finally I know more about the disorder because of my profession.
The feeling of not being in it alone, the fact that I can explain what is happened to the cells and what is happening in the body tissues at the time of crisis makes it easy to talk about it.
When you ask if it makes sense for two carriers of the sickle cell disease to get married, hmmm, SS and AS genotyped people are all out for AAs, how many AAs could there possibly be?
I have been at this point before. I am SS and was in a relationship with a girl who is AS. I saw a wife in her and that was what mattered only that she wasn’t willing to go the marriage line. I know of an SS who married an AS and they are happy together. Children come after marriage, a good marriage is first the husband and the wife who love and understand themselves.
I don’t subscribe to having children with SS because of love. The pain is not something children should be subjected to but I appreciate it when couples love and understand themselves. Adoption is an option for me or even remaining together without children. It’s not an easy decision to make but understanding matters a lot.
As someone living with SCD, you need to understand that living with sickle cell builds courage, determination, endurance and perseverance. Discover these strengths.
The truth is we can do anything we want to do but MODERATION is key.
Learn to pace yourself and understand what works for you. Follow your doctor’s orders but you could be a deviant sometimes, it makes it all fun.
