What's In A Name - The Sickle Cell Delimma

According to Merriam-Webster the definition of the word “name” is 1: a word or phrase that constitutes the distinctive designation of a person or thing 2: a word or symbol used in logic to designate an entity.

With the understanding of what the word “name” means is brings me to my first question. Why are some within the Sickle Cell Community, so offended by the name “Sickler”?

If I were to play devils advocate and attempt to answer my own question, I would say that it’s because a “name” is more of a spiritual implication that speaks of one’s purpose and destiny. I personally do not have a problem with being called a sickler if it is being done to quickly identify me as a patient in need of specialized care. If that is what activates medical attention and identifies me as one to be seen expeditiously, then Sickler I am.

I think that the problem with the term is that it has been used as a stereotype that specks to the inaccuracy of the condition and those who suffer with the blood disorder. Does that change with the changing of a name? God was notorious for changing people’s name and it was a direct result of their new relationship and standing with Him. By changing their names it was a way for others to know there had been a change in them. A name oftentimes is accompanied by a reputation and perhaps the reputation is such that it over shadows the name itself.

Lets explore the name changes that the sickle cell population has undergone. Does anyone really know how we even got the name sickler? I would guess it doesn’t really matter, because the reputation of the name is so tainted that many refuse to accept it and are out right offended by it.

Back in the late 90’s when I first began to engage the sickle cell community and accept the call as an advocate for sickle cell disease, one of the first things that I noticed was that people wanted to be called “Defiers” it spoke of their ability to defy the illness that was killing them. I didn’t see a big change within the medical community and no matter what we had decided to call ourselves we were still being referred to as sicklers.

Then there was this term of strength and in walks the “Warrior” this was much more befitting, because it spoke to our battle with the disease and was an indicator that we were well versed in the subject of warfare and had an immense understanding of the disorder that we were in war with. Some of the medical community began to take notice and change in small ways, because I think for the first time they realized the amount of strength and agility it took to manage the disease successfully.

The problem occurs when those of us who are not so informed decide that we will carry the title because it puts us in a place of authority and takes us from victim to victor. Now we have a mixture of individuals who are now holding on to a new hope that somehow this name change will wipe out the reputation of the community.

Is there ever going to be a name that takes away the lack of awareness, ignorance and shame? I can’t be certain, but that is why I come to offer you yet another title. When I started the SCD Soldier Network, I wanted to provide a place that supported the real warriors (the one’s that were truly on the front lines and were working towards systematic changes) while also training those who battle the disease in less than a heroic fashion.

I wanted to begin to chop away at the reputation and provide a network of individuals who would help bring greater awareness to the battle and change the perceptions of those living with this condition. If I were going to try and change people’s perception then I was also going to have to change people’s actions that solidified the stereotypes. There is only one real difference between a warrior and a soldier. It is that a warrior is oftentimes in battle alone, whereas a soldier has enlisted with other warriors and less skilled fighters to battle.

A warrior who has enlisted to fight with others does not lose their rank nor their ability to shine, they have just positioned themselves to train others and to place themselves in a unit of covering, much like a Christian becoming a member of a church.

Soldiers have many rankings and not all are expected to have the same level of experience, but they are connected to a team who will stand along side them to accomplish the mission at hand.

Have we found a suitable name yet? Personally I don’t think so, but what I want to do is to change the attitudes and understanding of those who insist on still calling me a “Sickler”.

Enlist today and move up the ranks, until you can truly stand up in the authority of the name that God has given you. SCD Soldier Network is working toward providing the training that will impact the medical community in such a way that no matter what they call us, they know who we are. Your thoughts on this subject are greatly sought let me know what you think.