Welcome to ‘Sickle Sagas’: Documenting Life With My Disorder

Recently I have been engrossed in sagas about the viking king Ragnar Lothbrok as well as his famous sons’ exploits.

A saga is a long story often involving herculean challenges. Although my life isn’t as dramatic as ruling over great nations or fighting for crowns, reading these stories has made me reflect on how life with sickle cell disease still involves plenty of dramatic moments and battles — some I win, and some I lose.

The extreme and varied impacts sickle cell has had on my life led me to choose the column name “Sickle Sagas.” Through sharing my sagas, I’ll document what life is like for me, and hopefully other sickle cell patients and carers will be able to relate.

For any readers who may be unfamiliar, sickle cell is an inherited blood disorder that causes the red blood cells to form sickle shapes. These cells clump together and cause blockages in the veins, which in turn causes immense pain known as a sickle cell crisis. These crises can last days or weeks and cause serious complications such as an increased risk of infections, anemia, and acute chest syndrome.

I have always viewed sickle cell as a beast raring to escape the cage of my body (like Naruto, if you’re into anime!). I work hard daily to suppress this beast so I can do the things I enjoy. When sickle cell is locked up and sealed away, I feel I have some semblance of control, just like everyone else. I’ll think, “Sickle cell? What’s that?”

However, like every good story, there are conflicts: I can’t always have it my way. Sometimes a trigger hits and I lose control. The chains break, the cage is broken, the beast is set free to dominate, and another crisis begins. The ongoing war’s unpredictability — the enemy’s sneak attacks — complicates life planning.

Once I have a crisis, I aim to return to a state of perceived normality: to breathe again, to be able to walk or write, to put the beast back in its cage. Sometimes battles can last days, months, or hours, because even when the beast is caged again, I still must recover from the damage left behind. How did it affect me mentally? Physically? What about those closest to me? Are they OK, too?

Because no, sickle cell doesn’t only affect me. I strongly believe that we are each responsible for our own well-being, but I’ve also realized that having sickle cell means I can’t always be in control, and so I need support from those around me.

Even though sickle cell is one of the most common genetic disorders worldwide, very little is known about it. As a result, patients often find themselves teaching others about it because one day, our life may depend on how much a stranger knows about the condition.

My column aims to chronicle my sickle cell experiences to encourage, inspire, and educate everyone so that one day the lack of awareness and information can be seen as a problem of the past.

My name is Dunstan, and I have sickle cell disorder. Journey with me through these Sickle Sagas each Monday.

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Note: Sickle Cell Anemia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Anemia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell anemia.