One thing that pushed me to start this blog was the desire to debunk myths and break the silence about Sickle Cell Disorder. Despite being encouraged to do so for years, I felt the urge to blog after reading a very negative comment about sickle cell warriors on Face book. There was this burning desire to speak out. I do receive encouraging messages about how my little efforts are changing perceptions about sickle cell. Yet, there are still many more wrapped in a time frame, unwilling to change their misconceived ideas about sickle cell. The more I read about people’s opinions on sickle cell, the more I realised just how much of an uphill task it is to eradicate deep seated beliefs.
Still we have to keep trying. Ignorance they say is bliss. However, where sickle cell warriors are concerned, ignorance is not bliss. Ignorance means discrimination, stigmatisation, indifference and even death. Here are ten misconceptions about sickle cell I think it is important for everyone to know if, we ever wish to break the silence and stigmatisation surrounding warriors. So please buckle your seat belts let’s take a ride into the real warrior world.
1. Sickle Cell Pain IS NOT A State of the Mind.
Many people do not understand when they meet a warrior screaming and the response to ‘what is wrong with him/ her?’ is always ‘they are having pain crises’. Ah ah pain crises na which one? This pikin no di pretend so? That thing de na ele fo ih head. Oya my people this is not psychology 101 where you have to break down our crises to some psychological something felt only by us to make the people around us miserable. The simple matter is that the pain is real; so real so that if it was possible, one could practically reach out to touch and feel it. My people it is not in our head or a state of our mind. It is as real as the air we breathe.
2. Our Condition and continuous Pains IS NOT An Aspect of A Lack of Faith.
It is annoying when people question our faith or lack of when they meet us sick claiming we do not get that much needed miracle because well oh we of little faith pray not hard enough. The truth is if prayers and faith were all that was needed for us to be free of this condition; the world would be rid of sickle cell centuries ago. If we lacked that faith, at least one person in our support team would have the faith to move mountains. Besides, didn’t Jesus heal people before many put faith in him? So we shouldn’t be faulted for being some doubting thomases right? We have been looking for that miracle all our lives. Relax people. Do not be too quick to judge us. If only you know, our faith and prayers are the only sure constants in our lives as we fight this battle daily, embracing the miracle of life each day we wake up without the slightest bit of pain.
3. We Are Not ADDICTED To Pain Killers
It is true some warriors become addicted to pain killers because some of these painkillers are addictive. That doesn’t make all warriors addicts. Even if we all become addicts to painkillers, we don’t become so by choice. The simple truth is we do not like taking the painkillers but we cannot do without them. It is therefore disheartening when some Drs or others erroneously assume we demand pain killers because we want to satisfy our addictive cravings since the pain is only in our mind and due to this warped notion, many warriors suffer agonising pains. If one drug seems to be addictive, there are many non addictive others we can take. The important thing is, give us a pain killer when we need it. We are not drug addicts.
4. Doctors and Health Personnel Do Not Always Know IT All.
Surprised about this? You need not be. It is the truth. While we are not trying to undermine the efforts of dedicated doctors who go out of their way to help us, it is also a truism that some of the doctors and health personnel do not always know what to do when faced with a warrior in crisis. I have been there and heard what do you expect us to do several times. I have been administered wrong drugs and wrong doses which almost proved fatal several times. I can say with certainty that I know and understand my condition better than some doctors and health personnel and the same goes to many warriors and their care givers. When Drs collaborate with warriors and care givers, it becomes easier. Some medications do not work for me and some that work for me will not work on other warriors. Our case is not a one size fits all. So yes, we do have the right to talk and express ourselves not to be silenced with the listen to your Dr they know better line. They don’t always know it all.
5. We Do Not Always Die Because of Our Condition.
Of course most of society has branded us half dies and expect us to drop dead any time we have a crisis. The reality is that while it is true our condition seem to shorten our lifespans, we do not always die from it. Mismanagement, misdiagnosis and wrong ministration of medication kill us faster than our condition. So yes, our families are well within their rights to demand a post-mortem if our death appears suspicious.
6. WE ARE NOT OVERBEARING.
I had to scream this out. The ignorance displayed by many people is just sad and this ignorance unfortunately affects us. How often we try to suppress our screams and tears. How often we feel guilty when we see our people spend sleepless nights with worry faces hovering over us thinking our next breathe would be our last and some consider that overbearing? If you have never worn this particular pair of shoes, you will never know what it means to live with unbearable pain as your life long companion. You will never know what it means when one minute you are laughing and the next minute it is like someone is pricking you nonstop with thousands of pins or hitting you with a hammer mercilessly. If you can go through this all your life without screams or painkillers then just maybe you are right to call us overbearing. A little understanding of sickle cell care and pain management would go a long way to clarify this. So please educate yourself before you consider us overbearing.
7. Miracles Do not Happen in Genotypes.
Sickle Cell is a genetic blood disorder. You are born with it. Telling people to go for prayers and get their SS changed to AA, making them stop taking their medications because of the belief that they are cured is tantamount to murder. I have seen that happen. Science has advanced and more improved care for warriors are available which is good. While praying, keep taking your medications. Your SS will not automatically change to AA
8. We Are Not Obanjes and Mami Waters.
I will just leave this here but it is important to understand we are not some agent from the dark kingdom sent to cripple our families financially while making their lives miserable.
9. 21 Is Not The Golden Year
I turned 40 in July. That is almost two decades more than the expected 21 years many believe is our lifespan. I know many older than me still kicking and waxing strong. 21 is not the Ultimate golden age for warriors.
10. We Cannot Raise Families
I have heard it all and of course made to feel my dreams are like building castles in sand. This is just another myth which needs to be debunked. I know many warriors married with kids and doing a wonderful job at parenting; living happy fulfilling lives too.
I hope you enjoyed the ride into warrior land with a clearer understanding of why all these are just myths about us. The fact that we choose to be happy doesn’t make our pains fake and our screams pretentious.
Let’s keep educating ourselves as we strive to break the silence and stigma surrounding us. Spread the word and join me in my quest to #BeASickleCellVoice.
Keep reading, keep sharing and keep commenting. We are inspired by your comments, thank you.
ARREY E. AGBOR-NDAKAW.