Back in the day and I am referring to the 70s or 80s (and some might say even now), anyone who lived with sickle cell was called all kinds of negative names. I wonder what was responsible for this. At this time, survival rates and life expectancy were high for people living with sickle cell. I remember hearing it said back then that once one was 20, the worst was over, or one would overcome the crises. I don’t know who started saying such a thing because the opposite is the case; crises do not go away as one grows older.
We know that when one has a crisis, when the clogged sickle-shaped blood vessels are blocking the passage for other blood vessels to flow through, it can have damaging effects on the individual if care is not taken. This is the reason when one goes to a hospital during a crisis, the right protocol is to make sure that one is given a drip as quickly as possible as well as pain medication.
The good thing is because of advancements in science, technology and research, more and more people are living longer with sickle cell and young children are also not dying like before. The mortality rate in different age groups is dropping and that is good news because there are various options available. For example, there are tablets to take, injections or bone marrow transplants and gene therapy. There are options for anyone who has a child with sickle cell now, compared to the last century.
My gripe has been this name-calling and I have often wondered about the effect of being called a certain kind of name, all because of being sick. A child is diagnosed with sickle cell because every person inherits one haemoglobin gene from their mum and one from their father. Haemoglobin is a protein in red blood cells. It carries oxygen to all the tiny cells of the body that make up our organs. All cells of the body need oxygen. Haemoglobin gives blood its red colour when it is carrying oxygen from the lungs. However, for parents to call their children names when sickle cell is inherited is unacceptable.
I think that calling people living with a disease names will surely affect the individual. It is surprising how being called names can come from family members, healthcare providers, so-called friends, bullies on the playground or work colleagues. A lot of people are told they will not make it past 20 or 50. When one clocks 22, right up to 25, or 52, now what? How is anyone who has been told they would die young navigate life if still alive after that milestone age?
I wonder what it feels like for an adult who has been told most of their growing-up life that they could or might die suddenly. How do such words make one feel? How does one get over being called names by those who are closest to one? Do you pretend those names are not yours and get on with life? Or should those names affect one for life? Could the person living with sickle cell think, ‘If I am going to die young, then don’t let me bother striving to become anything in life?’ Or ‘don’t let me do much, after all, I have been told I could die young.’
Speaking for myself, the name-calling had the opposite effect on me. I thought, ‘I am not those names, and I will show whoever is calling me names that I can be an achiever.’ On a personal level, I never thought I would live to be 50. As such, I really did not make plans beyond that age. There are things that I am doing now that I should have done ages ago had I known I would be blessed to live well over 50. In my situation, when I was 50, I was very low. I felt worthless and could not see past my feelings of despair. But I eventually picked myself up and I have continued to make strides in my small way. I look back and I can say that my faith in God has been a strong anchor.
Once I reached 50, I started learning about sickle cell disease more and I started finding out how to manage the sickness as I grew older. I could no longer be careless in my daily living with sickle cell. It was important for me to know how to care for myself in my old age. So, for example, recently, I was in the rain, which is a trigger for a crisis. However, once I got home and took off my wet clothing and trainers, I went straight into the shower, and I mean very hot shower and took some tablets afterwards with food. In the past, I would have thought nothing of it and hoped I would be okay. But I can tell you that nine times out of 10, I would have had a crisis. So, learning and knowing what happens before I have a crisis is important for me to avoid becoming ill. It is also important for me to say no, to perhaps promises I have made, if I feel slightly unwell as opposed to going ahead to keep a promise and then ending up in bed or in hospital.
Nowadays, in order to make the right decision, one main intervention for would-be parents is a screening programme that is available so each parent can find out what their blood group is. Scientific improvement in the lives of those diagnosed with sickle cell has been with intervention in early childhood. Nowadays, there is a comprehensive care package available for children living with sickle cell and this has been linked to improved survival. However, this is not the case with adults. Survival has improved a lot for anyone living with Sickle cell and that means there is hope for babies born in this century. The intervention that is available now for children was not available for those who are now adults. In short, one has to live one’s life and not allow naysayers to influence the type of life that one has the capability of living.
If you would like to get in touch with me about Sickle cell, do so, via email: [email protected] And do check out my blog: https://www.dailylivingwithsicklecell.com/ My book on sickle cell – HOW TO LIVE WITH SICKLE CELL and my other books are available for purchase on www.amazon.com.
