My Journey to Becoming an Advocate
Growing up, sickle cell was always a hindrance in my life. It often limited me from being able to do the things that I loved to do consistently due to being physically unable. There are times when I'm in too much pain to leave the house or feel too mentally drained to be my normal, proactive, bubbly self.
A wake up call
During the pandemic, due to the collapse of the National Health Service (NHS; the health system here in England) and the lack of support across the board, most of lock-down and shielding really acted as a huge wake-up call for me. I had to learn how to fend for myself even more so during this period than before, as the government here in the UK really left us to fend for ourselves. I was literally left with no choice.
A pandemic crisis
Unfortunately, early on in the pandemic, I caught COVID-19. I was also severely ill with a sickle cell crisis. I tried to call all of the suggested services and reach out for help, but they were all too concerned about COVID-19 on a wider scale to even attend to me or to treat me as an individual. They didn’t even try to help me with my personal concerns in regards to my sickle cell, or provide me with any form of medical care or advice around having COVID-19 beyond advising me to stay home.
Once again, I felt very neglected, dismissed, overlooked, and let down by the system.
Sharing my story on social media
Due to my continuous frustrations around the system, COVID-19 ended up acting as a huge breakthrough moment for me. Lock-down became a wake-up call. It forced me to speak up and speak out against the systematic injustices in which sickle cell warriors were facing here in the UK via my Instagram @dialecticdee.
I had already established a community and had quite a good following racked up from my previous work as an artist, being consistent, and establishing myself as a brand on social media. I had just hit 5000 followers, which was a blessing in itself. My community really helped me push my message and research further by re-sharing and reposting the exposing evidence I was posting on my main feed and page around sickle cell and the lack of support or help with health costs and on their stories.
Becoming a sickle cell advocate
Before I knew it, my work was labeled as advocacy work, and I became known not only as a spoken word artist, but also as a sickle cell advocate.
I didn’t know my work would ever go down the route of advocacy even though I have always been very political and outspoken. I never knew that advocating would become part of my everyday life. I never knew that sickle cell would also nourish and give back to me rather than solely take away from me.
It is a true blessing that I have finally managed to learn how to bridge the gap between what I love doing, (performing poetry and public speaking) with advocacy. This has allowed me to find a way to turn my testimony from a negative into more of a positive.
I can inspire others along the way as I navigate through this journey of living life with sickle cell.
Have you had a special caregiver in your life?