What Others Need to Understand About Sickle Cell Pain Crises
A columnist explains how the emergencies hurt, and how others should respond
In many of my columns I’ve referred to suffering a sickle cell crisis. But what does that mean?
Sickle cell disease is a disorder that affects the red blood cells. These cells are usually circular and biconcave, allowing them to easily transport oxygen around the body. But in a sickle cell patient, a faulty version of hemoglobin causes the red blood cells to be shaped like a banana or a sickle. As a result, they can get stuck in blood vessels and cause blockages, which is extremely painful.
These episodes are known as sickle cell pain crises. They can happen anywhere blood flows in the body.
What does a crisis feel like?
To me, it’s like the epicenter of the affected body part is full of mini people armed with daggers and stabbing outward in all directions. It’s a sharp pain; it radiates and vibrates from the site of the blockage to the surface of the skin. I wouldn’t wish it on anyone.
Communicating the pain’s severity in a way that others will understand is challenging, but vital. The only thing I can liken it to is stabbing. But when people are ordinarily afflicted with a stabbing pain, it tends to radiate from the skin inward. I’d ask readers to try to reverse that feeling. Imagine tons of people are inside your bone, stabbing their way out with knives.
For context, I recently had surgery that required doctors to make an incision in my neck, moving down to my chest. While recovering from the surgery, I suffered a crisis, and the pain was far greater than the surgical wound. Sickle cell patients who’ve given birth have said they’d choose labor over a crisis. The U.K.’s National Health Service has even listed sickle cell as one of the 20 most painful conditions a person can experience.
What to remember about sickle cell pain
It’s imperative that healthcare professionals don’t negate a sickle cell patient’s pain merely because it can’t be seen. If someone presents at the emergency room with an object impaled in their leg, healthcare professionals can quickly identify the cause of distress and treat it. When a sickle cell patient appears OK, however, those same professionals may have trouble understanding or accepting that the patient’s in agony. I hope my description of the pain helps practitioners understand what we’re feeling.
I also want people to remember that sickle cell patients spend a lot of time in pain, which means we might not cry or scream when we’re hurting. If I were to cry, scream, or stop my daily activities every time I’m in pain, I’d have no life. I wouldn’t be able to work or socialize. I’d be in bed 80% of the time. That’s no way to live, so I have to persevere and push through the pain whenever I can.
Therefore, if you see a sickle cell patient smiling, moving around, or working, don’t take this as grounds to question the legitimacy of their pain. We simply have higher thresholds because we’re in pain most of the time!
Lastly, a note for healthcare professionals: Many sickle cell patients are encouraged by our medical teams to use distraction during a crisis. Though it won’t alleviate the pain, distracting ourselves can help us ride it out. If a patient you’re treating seems to be preoccupied with other things, please don’t take this to mean that you should delay administering pain relief or question the legitimacy of their symptoms. Watching TV, reading a book, or meditating can help us stay sane by shifting our focus to something besides the pain.
What do you wish others understood about sickle cell pain crises? 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.
About the Author
Comments
Ben
Hello,
Thanks for your article. it so important that health care professionals fully understand what Sickle Cell patients are going through.
I wanted to ask if you aware of research that shows that Omega-3 supplementation, can lead to a decreasse in pain episodes in Sickle Cell patients. This does not get much mention in the UK. You may want to check it out, with a view to possibley including Omega-3 in your supplemnt regime.