My Mind Is Reeling After I Narrowly Avoided a Sickle Cell Crisis

The fear of crisis pain leaves columnist Dunstan Nicol-Wilson shaken

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by Dunstan Nicol-Wilson |

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Winter has arrived here in the U.K., and the end of the year is fast approaching. During this period, it becomes difficult to avoid things that can trigger a sickle cell pain crisis, including cold weather, stress, exhaustion, and an unbalanced diet. While some things are in my control, I can’t get rid of all my stress or change my environment.

As a result, I experienced a “pre-crisis” last week. This is what I call the sensation of incoming pain before I’m hit with a full-blown crisis. It’s almost like a sixth sense that warns me I’m doing too much. But if I intervene early enough with medication and rest, I can avoid a potential crisis.

In this instance, I had access to my medication and could rest and drink plenty of fluids. I lay in bed, anxious about which way the pendulum would swing. Would I have a crisis, or would I be able to return to my regular schedule the following day?

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When a Crisis Occurs, I Must Be Honest About the Pain

In hindsight, I realize I was overwhelmed trying to accommodate all of my commitments and my work life. The pre-crisis sensation was a positive reminder to check in with myself. As a result, I cut back on some of my commitments and became more intentional about caring for my well-being.

While I was ultimately able to avoid a crisis, the experience still brought mental challenges.

On my good days, I tend to forget the pain of a crisis. I feel this is essential; otherwise, I’d live in constant fear of it. The pre-crisis sensation reminded me of the pain of my blood revolting against my body — a pain unlike any other.

Of course, the pre-crisis was only a warning of what could happen, but difficult memories and feelings still resurfaced for me.

When I experience a crisis, I fear my everyday routine. I fear doing too much, so I swing the opposite way and do nothing. I begin to withdraw and retreat to a safe space in my mind, absent of pain.

In this state, I have no desire to do anything that could cause me pain or stress. I’m not social or physically active. My emotions and thoughts spiral into chaos.

It’s suffocating to be trapped by fear of returning to that place.

Now that I’ve recognized this, the next step is to find a way to get the support I need. Unfortunately, averting the physical pain of a crisis ended up causing me mental pain. I’m slowly but surely trying to regain control and face my fears, but it hasn’t been easy with my triggers circling me.

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.


Shekanah Ficklin-Dean avatar

Shekanah Ficklin-Dean

This article resonated with me, profoundly. I go through this mental anguish after a pain crisis or after preventing one. I find that therapy helps. My therapist is amazing. Journaling also helps me a bit. I enjoy your articles. I am a writing & Comm major and I plan one day, as well, to write about my sickle cell journey.

Dunstan Nicol-Wilson avatar

Dunstan Nicol-Wilson

Hi Shekanah. Thank you so much for your message! Therapy is an amazing outlet, and when you do eventually write about your journey, please do share!


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