Learning to Be Kinder to Myself With Sickle Cell Disease

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by Dunstan Nicol-Wilson |

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I struggle with the fear of letting others down. For example, suppose someone scheduled a work meeting that is inconvenient for me. I’ll do anything to make sure I attend instead of suggesting an alternative. Of course, offering an alternative doesn’t mean no or that they won’t work with me. Still, my brain struggles to accept that it’s OK to suggest something different.

Another example is rescheduling a social event or meetup. In my mind, this feels almost impossible. Unless I have a sickle cell crisis or can’t physically push myself, there isn’t a valid reason for canceling.

Recently, I’ve been reflecting on this aspect of my personality. I’m fixated on not letting anyone down, and I’m unable to make adjustments that would help me. Why do I view rescheduling as the worst thing ever?

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Changing plans is part of life because, as humans, we don’t have control over everything. While rescheduling is normal in a fast-paced world, I tend to forfeit this option out of fear of the repercussions. Usually, the only repercussion is a feeling of disappointment from both parties. Still, people are usually understanding.

I think my desire to make things work stems from living with sickle cell disease. As a kid, getting excited about something but eventually missing out on it because of a crisis was typical. So early on in life, I developed a habit of making sure my school attendance was near perfect. And if I made plans with friends, I’d accept the first date suggested so I wouldn’t be an inconvenience.

I would only miss school or work if I was incapacitated with a crisis, and I’d struggle to attend while recovering. I have vivid memories of not being able to write in school because of crisis pain in my arm, or limping to work because of pain in my knee. I would always regret that I couldn’t be my usual self because of crippling pain.

As an adult, I’m realizing how unhealthy this behavior is, as I’m failing to show myself kindness and understanding. In conversation with my support network, I realized two things. First, in my day-to-day life, I do my best not to let people down and have developed a good reputation for being there when it counts. Second, I have demonstrated my reliability and effort to meet deadlines at work, so I have built up some goodwill with employers and co-workers if I need to rearrange something.

I do my best when I’m well, but I can’t do so when I’m unwell. I need to stop fixating on things that I can’t control and consider what is best for me. I must realize that people in my circle would rather see me well and at my best than overwhelmed, struggling, and toeing the line between sickness and health just to keep everything together.

Putting myself first has always seemed so selfish. But the reality is that I need to be kinder to myself and stop putting others’ needs before my own.

Rescheduling isn’t the worst thing in the world. I don’t need to put my health on the line to be there for everyone else.

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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