Patient Blogs | Sickle Cell Disease
What It’s Like Living With Sickle Cell Disease
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Sickle cell disease is an inherited disorder that causes red blood cells to form sickle shapes. These cells stick together and cause blockages in the vessels, which in turn causes immense pain known as crises.

crisis occurs when I hit one or several "triggers," such as tiredness, cold exposure, dehydration, or stress. The best description of the pain of a crisis is imagining your hand trapped in a car door being repeatedly slammed. Now imagine that pain constantly happening as your blood continues to push through these constricted vessels. When I have a crisis, this is the level of pain I experience, which can vary in levels. These crises can last days or weeks and cause other serious complications, such as the increased risk of infections, anemia, and lung problems.

It is difficult to tell visually that someone has sickle cell, so it's often called an invisible disorder. Externally, I look like everyone else and have had a long history of pretending to be OK to fit in with societal norms. However, something different happens internally on days when I am in immense pain. On my good days, I can walk around, while on my worst days, I lose the ability to do that and anything else for myself.

My subconscious is filled with avoiding potential crises while navigating everyday life. Hospital checkups, exercise, therapy, vitamins, and medications are all essential to my daily routine to try and stay well. It's taken me a long time to get to this point where I can be open and honest about my struggles with sickle cell and this journey.

As a child growing up, I didn't understand the condition. I would get overexcited about an event, and suddenly I'd be hit with waves of pain and immobilized. I began to link excitement with pain and would try my best not to be excited. I didn't know how to cope with the possibility of having a crisis and living in fear of the pain I didn't understand. The trauma caused by unexpected crises, poor treatment in the hospital, and lack of support are all events that I am still processing and recovering from.

As a result of this upbringing, sickle cell has had a varied and significant impact on my life physically, mentally, and emotionally in my journey. There were a lot of unresolved emotions to process and feelings of isolation that led to me hiding the condition in my teens and early adult life.

I tried desperately to separate my life from sickle cell. I didn't tell anyone I had sickle cell except my close family and friends. In my mind, I didn't want anyone to see me as weak or less than others, so I would keep it a secret when I went into the hospital. So I tried hard to maintain the facade and dealt with my pain secretly.

The secret was a heavy burden and mentally and emotionally draining. All aspects of my life, such as university, relationships, and work, were impacted as I couldn't trust people would understand or be able to support me. I continued to hide sickle cell until I couldn't anymore. A severe crisis in 2018 that led to a hospital admission after 6 years of not having one started my journey of acceptance.

Pretending to be OK or hiding my condition has been more damaging than helpful. I had continually undersold how devastating the impact of having sickle cell was to everyone, myself included. However, thanks to some therapy sessions and my support network, I've accepted my situation. Embracing sickle cell as part of me means I can now stand confidently amongst my peers. I’m on a journey of embracing my true self. My blog posts aim to continue informing the world of my sickle cell experiences and encouraging, inspiring, and educating everyone about the condition.




Photo Credit: Rick Gomez / Tetra images via Getty Images

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Dunstan Nicol-Wilson

Dunstan Nicol-Wilson

Diagnosed since 1993

Dunstan Nicol-Wilson is from London, England, and was diagnosed with the “invisible disorder” sickle cell anemia from birth. Nicol-Wilson has a BSc in bioscience and an MSc in public health (global health). He has spent his career in research governance and is now a clinical project manager. In addition, he is also a freelance columnist and mentor. Nicol-Wilson began advocating for sickle cell anemia in 2018 through various talks, columns, and community outreach. He hopes his advocacy will raise awareness for sickle cell and blood donation, encouraging others to share their stories. Outside of work and advocacy, he loves to travel, try new experiences, and spend time with friends and family. He can be contacted via Instagram and LinkedIn.