What is it like you ask?
Well, I am a 25-year-old woman of the Kingdom Living with sickle cell and that isn’t easy, in fact, it’s tough, extremely hard, mentally exhausting and physically burdensome. It’s a massive rollercoaster of ups and downs, promising yourself that you won’t let it defeat you and being super proud of yourself and then in the same instance getting to a point where the pain comes, and you are reminded that you have an incurable disease that sometimes will take over your life. I am one of three and I was the only one diagnosed out of my siblings.
Before the year began, I made a promise to myself and God that my life would be completely different to how it was in 2017, I would be more intentional about my walk with Christ and how I manage my health, but as the end of January came, that all went downhill simply because I had a sickle cell crisis in my chest.
For those that know, it’s extremely painful and will put you in hospital no doubt! I was in hospital for 5 days; the whole process was tedious and painful but I did manage to get some rest- I guess! To add insult to injury, I was told that my B12 levels were extremely low, my blood pressure was too high for my age and I need to be put on a huge course of different medications so that I could get back to normal again. I was signed off work and life consisted of me staying in one place in my house. During my time of rest, I found it difficult to walk, I could hardly bend my leg (if I did I would cry out in pain) and as each morning passed my leg would get more and more stiff, turned out that I had an infection in my leg which needed immediate attention as the infection had spread to the other bruises I had got from the hospital. It was difficult. I was going through a storm, an extremely difficult one and all that was happening to my body physically was mentally chipping away at me, my confidence was low, I felt terrible all the time and it seriously affected everything – at one point I hated myself for the fact that I had sickle cell.
Even though I was going through so much I learnt a few things. For those that know what it is like to have sickle cell, I want to encourage you to not hate yourself like I did. Love on yourself time and time again. Focus your mind on being as great as you can be and aim high! Our minds are powerful containers and we have an unimaginable strength within us that can be used! And this can be done by living our lives, spreading our truth and spreading awareness! I refused to let Sickle Cell stop me, how you ask? Well, I found my faith, God saved me from myself, I understood that regardless of the metaphorical ‘thorn in my side’ I am still fearfully and wonderfully made.
I believe that more needs to be done to raise awareness for Sickle cell, it comes with many complications and it can kill. There are many realities that are not faced, we don’t hear about it much until unfortunately someone dies, and this has to change. I am grateful that in the last few years it has got some media coverage but we can still do more. To those that have sickle cell, we can be world changers. Never be afraid to tell your story.
When I started my job, I realised that not many people knew about sickle cell, so I decided to tell my story, raise awareness and raise money for a charity that helped me called the Sickle Cell Society. My office went from not knowing anything about Sickle Cell to understanding huge amounts and took the time to do all they can to raise money for my chosen charity. It was so moving, we raised a huge £7,483.06!
I learnt to believe in myself even when the rest of the world didn’t, I doubted myself a lot. I thought I would never be able to reach certain goals I set out in life. But by the grace of God I did! I graduated with a 2:1 in Forensic Psychology, (writing essays from my hospital bed!) I got married, (I never thought that I would be so loved and accepted by such an amazing person) and importantly, I shared my story, why? Because no one is going to tell your story better than you are. I am a living testimony that you don’t need to let your illness rule you. To whoever is reading this, here’s my word for you, I know that its difficult and it’s so hard but you are wonderful. Your illness may stop you from time to time, but it doesn’t define you. Never stop believing in yourself. There is nothing better than telling your story!
I blog encouragement and also hold talks on the topic, I love working with those who deal with chronic illnesses and am always looking to get involved and help wherever I can. Please feel free to follow my blog on www.themannaincentive.co.uk
By Nicolle Akinnewu