Hiding My Sickle Cell Disease From Others Taught Me a Painful Lesson

A school trip to Disneyland becomes a nightmare when a sickle cell crisis sets in

Dunstan Nicol-Wilson avatar

by Dunstan Nicol-Wilson |

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Building relationships while having a chronic condition can be a daunting challenge. On the one hand, you want to be yourself and let people accept you for who you are. On the other, you might worry about how people will treat you and how they will respond to your chronic condition. Knowing when to tell my friends and others around me about sickle cell disease was something I struggled with.

This dilemma was prevalent during my teenage years. Looking back, I wish I had dared to speak out like I do now. So many of my negative experiences with sickle cell crises may have been prevented if I would’ve had the courage to communicate better.

One example of this was a school trip to Disneyland Paris with my information technology class 15 years ago. I’d never been to Disneyland before, so I was excited and jumped at the chance. To this day, I’m still not sure how Disneyland was relevant to that class, but nevertheless, I planned to make the most of it.

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What Does a Sickle Cell Crisis Feel Like?

We left London early and took a coach and a ferry to our destination. The weather was cold and it had been raining all day, but that didn’t deter me.

After walking for hours in the cold and rain and going on rides, I began to feel pain in my right foot. I hoped it was just a twist or a sprain, but the pain was intense and debilitating. It was a sickle cell crisis. Worse, I didn’t have my pain medication with me because I hadn’t anticipated having a crisis. That was my first mistake. Sickle cell is unpredictable, and I should have prepared for it. 

Overwhelmed with fear and pain, I felt isolated and alone. I couldn’t tell the friends I was with that I had sickle cell because I had never mentioned it before. Instead, I chose to lie by saying I had sprained my ankle, which is a more straightforward concept to understand. I hobbled around while a friend repeated that I would be fine — it was just a sprain, after all. 

I limped in pain to our group meeting point. My agony and tears were conveniently masked by the rain and a scarf I wore. After an eternity of walking, I reconvened with my classmates and teachers. Without any pain medication, and given the amount of walking, the crisis was getting worse. By the time we sat down to eat, I could no longer walk. 

I told my teacher I had sprained my ankle and couldn’t walk. I hadn’t told any of my teachers I had sickle cell, so I didn’t think they would understand. My teacher accompanied me to the hospital. At that point, I was committed to the lie that I had sprained my ankle, and the result was that I was incorrectly diagnosed with a hairline fracture. My foot was put in a cast.

Looking back, these lies, and the inability to say what was really wrong, meant that I didn’t get the treatment I needed. I was so excited about the Disneyland trip, but it turned into a traumatic and painful event. If I had told those around me what was wrong, the outcome certainly might have been different. 

Have you had trouble telling others about sickle cell disease? Please share in the comments below. 

Note: Sickle Cell Disease 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 Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.


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