From Now On, Sickle Cell Isn’t Just About Me

Dunstan Nicol-Wilson avatar

by Dunstan Nicol-Wilson |

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I have often overlooked the song “From Now On” from the movie “The Greatest Showman,” because “This Is Me” has to be the best song on the soundtrack, right?

In the movie, protagonist P. T. Barnum, played by Hugh Jackman, feels as though everything is lost, until he’s reminded of what remains after the chaos: the people who love and support him. I always relate to moments like these because life with a chronic condition can feel like that.

While blindly enjoying the highs of life, I sometimes nearly forget I have sickle cell disease. Suddenly, a crisis will hit, things will begin to spiral out of control, and I won’t know how to piece it all back together.

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In my fall from the highs, my loved ones are there to support me and carry me home. They not only support me during a crisis, but also provide aftercare. They help me feel like myself again, both physically and mentally. I am so grateful for my support network.

But having people who support me means I constantly battle with feeling like a burden. I’ll think they shouldn’t have to deal with my sickle cell problems. I often feel alone — an outcast in a society where most people don’t have to deal with the condition.

I was quickly reminded that sickle cell isn’t just my disorder — my support network has to bear it, too. I’m not the only one carrying this burden.

This reminder really hit home. I felt like Barnum, disregarding the feelings of those who have supported me. I was focused on my own feelings and didn’t stop to consider how those around me were affected.

I really struggle with this because sickle cell feels like such an individual experience. I tend to compartmentalize the pain and the emotions that go with it. After a crisis, I expect everything to go back to the way it was, and for everyone to simply adjust to that.

This isn’t realistic. My physical and mental wounds may fade, but a crisis also inflicts wounds on those around me. My beast doesn’t only attack me, but also everyone around me when I’m out of control and in pain. Others need time to heal, too, and I often forget this.

Watching me twist and turn in pain must be so difficult to witness and deal with. There’s also concern about what will happen the next time I lose control. It’s hard to remove the guilt about the strain this must have on those closest to me.

However, for better or worse, those around me are stuck with me. So, from now on, instead of feeling guilty or like a burden, I will remember to check in and ask how they are feeling and processing.

Because my support network is my home, it makes me feel like I belong and am not an outcast. As much as my network supports me and motivates me to push forward, I also want to check in and make sure I support them.

Do you have any tips for checking in on the people around you? Please share in the comments below.

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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.

Comments

Michelle Africa avatar

Michelle Africa

I always feel like an outcast and it makes me not make permanent friends coz I wouldn't want them to see me at my lowest moment. It has made me lose previous relationships coz of the fear and I often never tell my partner a thing. Which makes me live with guilt

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Dunstan Nicol-Wilson avatar

Dunstan Nicol-Wilson

Hi Michelle. I understand that feeling when the guilt continues to build up. Try to be open with at least one person you trust and build your way slowly. I started with one friend and now I try to be open with everyone. Give it a try :)

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Shonia Singleton avatar

Shonia Singleton

This is so true. Thank you for the open experience. We have the same issue. My older daughter told me this a family illness we all feel the pain for her brother. She opened up and told me how she adjusted her live so that I didn't lose my mind when her brother was sick.

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Dunstan Nicol-Wilson avatar

Dunstan Nicol-Wilson

Thanks for sharing Shonia, I'm glad you were able to have those discussions as a family. Blessings to you and your family, keep going strong!

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