I hope you are all doing well and enjoyed the recent holiday season with your nearest and dearest!!
Today I really wanted to talk about how growing up with Sickle Cell affected my confidence, self-esteem and general life decisions. Living with SC meant that my parents kept a close eye on me at all times and wanted to do anything in their power to prevent me from having a Sickle Cell Crisis whenever possible. I can’t even begin to describe what it feels like to have a ‘’Crisis’’, I would never be able to fully explain the unfathomable amount of pain we go through, so shout out to all my people who have had to endure this, time and time again. As a child, I was not really sure I understood what it really meant to have SC and growing up with two siblings (an older brother and a younger sister) #Middlechild I genuinely felt no different to them at all. I had play fights with my brother (WWE style) and my sister and I would make up our own fun and games.
My earliest memory of having a Sickle Cell Crisis was when I was back in primary school and went on a school trip that involved kayaking, at the end of the day all the children jumped into the water and of course, I did too. I don’t think I had brought any change of clothes and so had to dry off as best I could and go home very damp. I felt absolutely fine until I went to sleep and it hit me! (For me these can be the most brutal! The type of pain that just licks you in the night with no remorse!) at this age, I had no comprehension of what was happening and as you can imagine, it was a very distressing experience. After such occurrences, there were a few things I began to notice growing up, I was always told to take it easy, wrap up warm and on cold days I had to put Robb on my chest (if you know, you know). I was constantly reminded that if I didn’t take extra care, I would fall sick. This was when I had figured out I was different and realised my family took extra precautions when it came to my health. I can only imagine what it must feel like to see your child in agony over and over again and I appreciate and love my family for caring for me in the only way they knew how but I would be lying if I didn’t state that in some regard, the way I was treated had a psychological effect on me.
Over time, I had developed feelings of self –doubt, isolation and anxiety because I felt I wasn’t able to do things others could. I really latched onto this identity (and probably still do at times) and it slowly became a crutch that hindered me from trying new things or getting involved in particular activities where there was a potential risk/fear of getting ill. This shaped how I related to my external surroundings, and I felt I used my illness to solicit empathy from others because I had a negative perception of myself and my capabilities. At the time, I didn’t realise this attitude was doing more harm than good, but as quoted by Maya Angelou ‘’ Do the best you can until you know better. Then when you know better, do better.’’
I think my turning point, was when I was at university and given the opportunity to travel to China with some other students. I deliberated for a long while whether it was the right thing to do and in my mind I truly believed there was no way I wasn’t going to get sick on the trip. I knew my mum was worried and had initially advised me against it, and at this point, I too had convinced myself to let the idea go. However, I decided to do lots of research on how I could keep well, weighing out all the pros and cons and finally plucked up enough courage to say YES. This was hands down one of the BEST decisions I have ever made and I truly had the time of my life, meeting new people, eating delicious food and walking the Great Wall of China. My eyes were opened to new opportunities and it was one of the first times I didn’t feel restricted by my health. I ensured I kept myself hydrated at all times, rested well, brought all the necessary medication and took things at my own pace and fortunately I got through the trip pain free. Since then I have travelled multiple times and have been less fearful about being open to events that have ultimately accelerated my growth as a person.
I think it is overlooked at how individualistic Sickle Cell is and although each of us may experience similar symptoms, these can affect us in very different ways. I fully understand that as an adult living with SC, I must be aware and vigilant of how this affects my health and I do not neglect the fact that exposing myself to certain things can trigger adverse effects on my body. I have been fortunate enough to not have had a major Crisis in the last few years, however last November I was reminded at how traumatic this can be when I landed in hospital for one week hooked up to an IV and on very strong analgesia feeling very sorry for myself!
This is why now more than ever, I make an effort to have a proactive rather than reactive approach to my health. For me this means consciously striving to improve my physical and mental wellbeing with the food I eat, and the activities I choose to partake in so I can bounce back gracefully and ultimately live my best life!
Thank you for reading x
You can find Moji on Instagram here: www.instagram.com/moji_x/