The blog is entitled Sickle Cell Can Kiss My A** and it is a positive and yet progressive platform for me, a sickle cell patient and advocate to explore all realms of thought into sickle cell. There is so much that sickle cell warriors go through (I refuse the term sickler, since having a condition like diabetes doesn’t label one a diabeters, or cancer doesn’t label one a canc-ler). Sickle cell warriors are in a constant fight on a day to day basis to keep ones head above water, deal with the pain, make the right decisions in life, deal with finances, medical bills and handle the backlash, negative vibes and criticism that having sickle cell brings.
But not everyone can have an attitude of gratitude; and not everyone that has sickle cell is a Christian. My life hasn’t been easy with sickle cell, and yet, through all the adversities, I’ve been able to overcome and live my life to the fullest potential. I’m a registered nurse, have a wonderful family of my own, working on my Master’s degree and holding down a full time job. All with sickle cell. My message is that sickle cell doesn’t have to own you, you are not defined by your diagnosis and you can live a rich and fulfilling life with sickle cell.
Telling sickle cell to kiss off (or kiss ass), is merely an expressive, a snub to the condition that threatens to overtake ones very existence. Though not the choicest of phrases, many people resonate with this survivor mentality and attitude. Sickle cell is not a walk in the park, it’s not roses and cream, it’s hard, it’s a struggle and only the toughest survivors can cope without wallowing in self pity, depression or emotional lows.
Painting life pretty, ignoring the tough side, and trying to hide the pain and agony that we go through on a daily basis hasn’t helped with public awareness— it’s only proliferated the mentality that sickle cell warriors are ‘fakers, drug addicts, lazy, malingerers‘. I don’t bring sickle cell down, I don’t make fun of my sickle cell warriors, I just talk about the other side of it…the real side of it. The hard side of it, that all sickle cell warriors go through but don’t have anyone to relate with about it.
The public doesn’t understand what we go through because NO ONE WANTS TO TALK ABOUT IT. If we don’t talk about it, how will they understand? I started my blog because I couldn’t find a blog that told the truth…a space that talked about the daily rigors of living with sickle cell. I’ve talked about relationships, work, sex, exercising, swimming, flying, fear of overdosing, hallucinations…the grittier parts of life that every sickle cell warrior goes through but no one wants to share. Other sickle cell warriors all over the world can relate to this, we are all fighting the same struggle and going through the same things.
There are many people isolated and stigmatized in the sickle cell community, in the USA, and in almost every tropical nation in the world. I’ve had emails from readers in Islamic countries, South American, Africa countries—even Indian and Asian populations have reached out to me, sharing their stories and building a community. Everyone has their mission, and perhaps the way I speak might rankle nerves; but I’m blunt, unorthodox, unconventional, and very happy to share my sickle cell testimony with the world.