I can’t really remember when I had my first crisis but I know growing up, as a sickle cell patient wasn’t fun. I am not sure which was more painful going through the painful crisis episodes or not having friends who truly understood what it was like to suffer from sickle cell anaemia. My tiredness was usually misinterpreted as laziness or weakness, which really used to frustrate me. I soon learnt to master the art of hiding a crisis episode just to avoid been called names. I would hide away to cry when in pain and put up a brave face when anyone was around. The downside to that was that a crisis pain that started in one joint would have escalated to other parts of my body and I would literally have to be carried into hospital on a stretcher. After one of such episode I decided enough was enough and I needed to face my reality. My reality is - I am a sickler, my blood cells are uniquely shaped and I don’t have the same level of oxygen as those I was trying to fit in with. I embraced my reality and stopped living in shame. I stopped caring about who called me what and if people understood or accepted my reality. This was so liberating for me. The freedom I had from stop caring gave me the boldness to try new things - things I would never have dared doing because of the fear that it might trigger a crisis. I haven’t become careless or reckless only more courageous. Although I lost some friends as a result of his, that just wouldn’t understand or accept my reality I realised what I feared the most was nothing to fear at all. Those who genuinely cared where willing to be educated and do all they can to help and those who couldn’t handle it bowed out of my life some more respectful than others. I no longer have to live in shame or fear. Having a crisis is part of my reality and when unfortunately it happens I am not afraid to ask for help immediately because I know those that those in my life now are people that truly understand and love me regardless.
By Adetutu Emmanua