How I’m Adapting My Pain Scale to Keep Myself Accountable

A columnist rethinks how he rates his pain during a sickle cell crisis

Dunstan Nicol-Wilson avatar

by Dunstan Nicol-Wilson |

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Recently, I’ve been trying to recall what the pain from a sickle cell crisis is like. Not remembering must sound a little weird, since a crisis is my most prominent symptom of sickle cell disease. Even on good days, I should have a solid grasp of what my pain feels like. However, my mind forgets once I’ve overcome a crisis.

I’ve been challenged in therapy sessions to return to these painful moments and try to explain how I felt. I’ve realized I struggle to describe sickle cell crisis pain to those around me.

I’m comfortable saying that I don’t feel well or that I’m sore, but saying “crisis” requires a different level of vulnerability. My inability to say it stems from wanting to maintain the facade that I’m OK. And if I’m using the word “crisis,” especially within the context of sickle cell, it means I’m not.

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To combat this, I’ve been using a pain score, where I rank my pain level on a scale of 1–10. It’s a standard tool used by many sickle cell patients. For example, fellow columnist Mary Shaniqua recently described the pain she felt while meeting a friend for dinner, saying it was at a 5 on a scale of 10 as she was driving to the restaurant. This made me realize that everyone rates their pain differently. I’ve rated my pain a 5 while bound to bed.

In many cases, being bedbound might indicate a higher level of pain. However, a 5 sounds right for me because I should be in the hospital when my pain score is higher.

But upon reflection, do I rank my pain lower because I’m worried about how I’ll be treated in the hospital? Going to the hospital remains my worst-case scenario, and I suppose that knowledge influences my rating.

After doing a deep dive into the pain scores I use, I’ve realized that the problem with the pain scale is that it’s in my mind. Many external factors, such as where I am and who I’m with, influence my response.

For example, the crisis I had while on vacation in Cyprus this summer was in my lower back, making it nearly impossible for me to walk around. As a result, I was bedbound, which would normally cause me to rate my pain a 5. However, I vividly remember saying it was a 2 or 3 because, in my mind, a higher score would have concerned my friends.

Yet I also knew I wasn’t in enough pain to require a hospitalization. My experiences with hospitals abroad have never been positive, and it wasn’t a possibility I wanted to entertain. Thankfully, I was prepared with the proper medication and recovered fast enough to rejoin the fun after a few days.

After I’d recovered, one of my friends said they’d rung the nearest hospital, and the staff had never heard of sickle cell disease. So I felt somewhat justified in my decision not to go. However, the danger of downplaying my pain is that I create a false narrative and don’t always get the support I need.

To hold myself accountable, I’m working on writing down what each number on my pain scale means. I’m accounting for how pain feels in different parts of my body and the environmental factors I must consider. I’ll also work on this with my support network, as they see my crises from a different perspective.

Hopefully these steps will allow no room for misinterpretation, enabling me to get the support I need without downplaying what I’m feeling.

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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