Looking back at the 5 worst sickle cell crises of my life
If I've learned anything, it's that sickle cell pain is unpredictable
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In my 39 years with sickle cell disease, pain has been an uninvited and frequent guest and my most prominent symptom.
Sickle cell crises are acute episodes of pain caused by the sickling of red blood cells, which impairs blood flow throughout the body. While I’ve had countless painful episodes throughout my life, a few have been truly unforgettable. I’d like to share the five most grueling crises I’ve experienced, each of which has tested my limits and left me with lasting lessons.
Until high school, I didn’t fully realize how much my mind could influence the sickling process. I was representing my school in a math competition when the organizers announced that we would receive the results immediately, rather than waiting another day, as was the norm. The sudden surge of nerves and adrenaline overwhelmed my system. My body reacted instantly, triggering a sharp, severe pain in my back that no medication could ease.
That day, I realized that managing emotions is just as important as managing physical triggers. One’s state of mind can cause pain. The crisis subsided only after I learned to calm down.
My earliest memories of sickle cell crises don’t involve sharp bone pain but rather a severe and terrifying discomfort in my abdomen. As a toddler, my abdomen often became distended. While I did experience intense abdominal pain at times, there were also moments when it felt like a dull ache or I had no pain at all. What remained constant was a discomfort so severe that it led to chronic insomnia. These episodes could last three or four days, preventing me from going to school or being active. The only relief I found was through vomiting, which would occur once the crisis had run its course.
Pain crises usually affect my limbs, back, chest, abdomen, or other extremities. Occasionally, I experience pain in unusual places, such as my teeth or head, but one episode settled in my gluteal region. It was unlike anything I had ever experienced. I couldn’t sit or lie down, or find a single comfortable position. It was a stark reminder that sickle cell disease knows no boundaries and can claim any inch of my body at any time.
This pain episode was severe and lasted for hours. Fortunately, I’ve only experienced it once and never wish to do so again.
The closest of calls
Another of my worst crises was the most life-threatening experience I’ve ever had. Ironically, it wasn’t the pain that almost took my life, but the inability to establish an intravenous line for a blood transfusion. My hemoglobin levels had plummeted to below 5 g/dL, leaving me breathless, exhausted, and slipping away due to severe anemia.
Because I have almost invisible, tiny veins, staff at multiple hospitals couldn’t place a line for the lifesaving transfusion I needed. The specialist for a central line was unavailable, and my family and I began preparing for the worst. My mind went blank as I waited for death. The hero of that day was my younger brother, a doctor, who arrived just in time to place a line and pull me back from the edge. This was, by far, the scariest day of my life.
The undisputed “king” of my pain history was an acute-on-chronic crisis caused by avascular necrosis in my knees. The impaired blood flow led to subchondral fractures in both knees, which was stage 3 of the condition. It felt as though a heavy truck were moving back and forth across my kneecaps. If I remained at rest or perfectly still, the pain was manageable, but the slightest movement felt like my bones were being crushed against each other.
This was excruciating and remains the most severe pain I have ever endured. Any attempt to move left me screaming and crying. The intensity lasted for months. Although the pain began to ease after six months, I continued to experience bilateral knee pain for a full year. It redefined my understanding of the human body’s capacity to endure agony.
If these 39 years have taught me anything, it’s that sickle cell pain is unpredictable. It isn’t limited to the limbs and can affect the back, head, abdomen, or any anatomical site where blood flows. The pain of sickle cell disease can even attack the mind and soul.
To everyone living with sickle cell disease, respect and avoid your triggers, stay hydrated, rest when you need to, eat healthily, take your medications faithfully, attend your appointments at specialist clinics, and never apologize for the care you require to survive.
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.
Cole Brendah
Sickle cell pain is unpredictable. It's pain can even attach the mind and the soul.
As a girl living with sickle cell in a country that is almost unware about sickle cell, such information is helping to navigate through and extend education and awareness.
Kawooya christom
It's quite encouraging to read about such revelations