Advocacy: 4 Ways I Turned My Pain Into My Passion
As much as my sickle cell has caused me pain over the years, I have managed to turn that pain into my passion. Sickle cell is now a pretty huge part of my life. Many of the things that I do now are a result of my experiences living with sickle cell.
Living with an invisible illness
As a child, having sickle cell made me feel like I stood out. All the things that made me a little different were never missed by other children. The constant questions of ‘why I was allowed to drink in class?’, ‘why I was allowed to stay inside if it was raining?’ and ‘why I always got to sit closest to the heater?' (I could go on) made me wish I didn’t have sickle cell at all.
As an adult however, things turned out to be the complete opposite. I wished for more awareness and understanding to be granted to myself and others. Instead, sickle cell is invisible and misunderstood.
Needing something to change
From my life experiences so far from education to the health care system and careers to relationships, I have recognized a need for something to change. I also would have valued someone to talk to when I was experiencing difficulties in all of these areas. Someone who would be able to relate to what I was going through. Or who may have even been through it themselves.
After going through a number of challenges in all areas of my life, I felt within myself that I needed to be the change I wished to see. It then became my personal goal to get my health under control. It was important for me to be able to manage my own health before even thinking about ways I may be able to offer support to others.
Today I have managed to turn my painful experiences into positives. I offer support to those living with and impacted by sickle cell in 4 ways.
In 2016 I released my first children’s book about sickle cell called "My Friend Jen". The aim was to educate people on what sickle cell is and how someone with sickle cell could stay well. I also wanted my book to give children living with sickle cell a peace of mind that I didn’t have. 5 years later there are now 2 books in the series with another one on the way and more educational resources in the pipeline.
2. Youth mentor:
I currently work at a charity called OSCAR Birmingham which is based in Birmingham, UK. The charity supports people living with sickle cell and thalassaemia. My main role there is as a senior youth mentor to the young people who use the service. I offer a listening ear and support as well as organizing activities and workshops. We also have conversations and discussions that prepare our young people for what they may encounter in life with their conditions to ensure they can be well prepared.
I often used to be invited to share my experience with sickle cell at small community events. The more I shared, the more confident I became at speaking. Realizing how valuable this could be in other arenas, I now speak to medical professionals at conferences and training days. I also speak at corporate companies spreading awareness and sharing how they can better support employees with invisible illnesses such as sickle cell.
As well as being a contributor for sickle-cell.com, I also set up a community blog during lockdown for people living with sickle cell and everyone who supports them. I started it as a way to bring the community together so we could encourage each other through a difficult time. I also wanted to highlight the great things that people do in the name of sickle cell.
Making a difference
It can sometimes be difficult for sickle cell to be such a huge part of my life. However, I am passionate about making a difference to the future generation so that their experience can be better than my own.
Anonymous Poll: Which of these have you experienced as a result of your disease? (choose all that apply)