Growing up with Sickle Cell Disease wasn’t too bad but then again, I didn’t understand what was wrong with me. I never really had that conversation with my parents about the fact that I had Sickle Cell Disease. It was never truly explained to me. All I knew is that I was different. I had ‘something’ which afflicted pain on me. I had something which meant that I’d have to go to hospital and I had something, which didn’t allow me to do certain things that my sisters and friends were doing.
I remember certain pain episodes during childhood, the ones that hit me the most emotionally. There was this one time in primary school where we had a school trip to the farm. I had just come out of hospital, so I wasn’t able to go. I really did not want to miss out. My mum allowed me to pack my medicine in a bag in hope that I could get on the bus when I dropped my twin sister off at school. My teacher refused to take me because I was “too sick”. I cried in the car all the way back home. I was upset that my sister could go and I couldn’t. I just didn’t understand why my teacher wanted to leave me behind, especially as I felt ‘fine’ at that moment. It got to the point where I just became sort of immune to sadness. I just accepted the fact that I was gonna miss out on school trips, bouncy castle days, parties and swimming lessons because I was ‘sick’.
By the time I got to secondary school, I was living in denial. I never accepted the fact that I had Sickle Cell Disease. I still didn’t even really know what is was. My life revolved around ‘whys’. “Why me God?” “Why can’t I just be normal?” I never spoke about the fact that I had this disease to my friends; I was truly scared that I’d be looked at and treated differently. I was the odd one out especially as I didn’t even know anyone else living with it. I felt like ‘one in a million’ but not in a good way.
When I got to around the age of 14, my friend invited me to church. After that, I felt like a whole new person. Slowly but surely, I started to accept the fact that I did have Sickle Cell Disease. I started praying and doing research on how to feel healthier. As a result, I went about five years without ever being admitted into hospital and this made me so happy. I felt ‘normal’ and my faith grew stronger. This led to me deciding to tell my closest friends. They were so supportive that I really didn’t know what I was so worried about. However the older I got, the more I realised I was in this journey alone and I am the only one who can truly help myself.
By the time I moved away to university, I was more knowledgable of this disease, how it affects me and I figured out a few of my triggers. I took on the job of educator to everyone around me. Making friends is always an odd process, but it’s harder when you need to assess and analyse whether the people around you are safe enough to look after you if need be. Anyone I considered a friend at uni, I explained and taught them about the disease and ways they can help me just in case I had an episode around them. It was strange because I actually enjoyed teaching them about it, it made me feel happy about how far I’ve grown over the years.
Being in and out of hospital as a child made me want to become a paediatric nurse. Getting a degree in children’s nursing was hard. Trying to revise whilst having episodes was almost impossible. I did not want to let this illness stop me from fulfilling my dreams. I pushed through and graduated with a first class. Having a degree in children’s nursing fills my heart with so much joy because it means that I can help look after children like me, children with invisible illnesses. I want to be able to tell them things that I never was like “you’re special” and “don’t let this stop you from doing anything you want to do”. Children are amazing; they find happiness in the darkest times. They are fearless, brave and nothing gets them down even being in hospital sometimes.
Despite the fact that my health has deteriorated over the years, my confidence and faith in God grew. My sisters encouraged me to start a Sickle Cell awareness page on Instagram (@SickleCell_Sundays). This page is all about my journey living with Sickle Cell Disease. The ups and downs, treatments and just me showing how it should not define someone.
Becoming an advocate for an invisible disease has truly given me a whole new perspective on life. It is a daily reminder of how strong we all are and how strong we have to be in order to fulfill our life’s purpose. It’s made me realise that life shouldn’t be taken for granted regardless of the situation I am in.
PEACE, LOVE & CURE
Gilde x
Additional Info
Sickle cell disease is the name for a group of inherited health conditions that affect the red blood cells. People with sickle cell disease produce unusually shaped red blood cells that can cause problems because they do not live as long as healthy blood cells and can block blood vessels.Sickle cell disease is a serious and lifelong health condition, although treatment can help manage many of the symptoms.
World Sickle Cell Day – 19th June
Resources
Sickle Cell Society – https://www.sicklecellsociety.org
Anthony Nolan – https://www.anthonynolan.org/patients-and-families/blood-cancers-and-blood-disorders/what-blood-disorder/sickle-cell-diseases-scd
Sickle Cell & Young Stroke Survivors – https://www.scyss.org
Book series My Friend Jen – https://myfriendjen.co.uk
Tips & Tricks
My tip to anyone living with Sickle Cell is to try and figure out your triggers for a pain crisis. This can help you avoid some pain. Examples include:
- Dehydration
- Extreme temperatures
- Strenuous exercise
- Stress
My trick for those living with Sickle Cell, find out what works best for you. The best pain management:
- Pain relief
- Hot water bottles
- Warm baths
- Drinking plenty of fluids
- Distractions
For more on Sickle Cell Disease, you can follow Gilde on Instagram
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